Lauren's Story

I met Lauren online recently, and asked if she'd please share her story with us. I was so excited when you said she'd love to. What another wonderful example of strength, faith, and love! Lauren also has her own blog and FB page. The link to her blog is under Blogs we Follow! Thank you Lauren!!









Hello! My name is Lauren, I’m 22 years old, and I’m a CHD Survivor (Tricuspid Atresia aka HRHS)
Here is My CHD Journey:
I was born in August of 1987, supposedly a healthy baby girl. I was taken home and thrived. A few weeks after coming home I started to display some things that worried my parents. I was throwing up everything I ate like a water fountain and was developing a rash all over my body. My mom took me to my pediatrician and they told her “I was fine”. My mom knew I wasn’t. Not only her second child, but she was a dietitian and had some medical knowledge; she knew something was wrong. My mom took me to the pediatrician’s once a week for 6 weeks, yet the doctors still insisted I was fine plus they now thought my mom was nuts! One morning when I was about 11 weeks old my mom found that I was breathing very heavy and turning bluish-gray when I cried, so she called up my dad, who was at work, and said she was taking me to the ER of the nearest hospital. My mom took me to the ER alone. When she got there, the on call doctor who looked at me first just had learned all about Congenital Heart Defects, so he knew it was my heart. I was taken to get a chest x-ray where I was put on a ventilator. Children’s hospital was called and an ambulance got ready to take me. Once my mom was told what was going on; she called my dad who came from work right away. My mom was not allowed to ride in the ambulance due to not enough room. They told my parents I was in severe heart failure and they didn’t know if I’d make it to the hospital. My parents had been thrown into every parent’s worst nightmare
I made it to the hospital and was stabilized. My cardiologist, the same one I have now, told my parents I have a Congenital Heart Defect called Tricuspid Atresia and that I had to have a heart cauterization to re-rip my PDA (the hole in the heart that every baby is born with, but closes in the first few weeks after birth… this hole was keeping me alive). My cardiologist was kind and caring to my parents. He answered their questions and supported them. The next day I had a heart cauterization to re-rip a hole in my heart. I was sent home a few days later on a few medications and a special formula which consisted of concentrated Isomil with polycose added so I could gain weight as I needed to be at least ten pounds for my first open heart surgery which I would have between 3-6 months of age!
My mom tells me it was a grueling task to get me to eat and keep down all my formula. She told me it took about an hour for one ounce and she needed to feed me every hour. If that wasn’t a big enough task to take care of me and make sure I ate and stayed healthy my parents had my older brother, Ryan, to look after who at the time was only 4 1/2years old and carried a lot of germs that could make me very sick. Of course Ryan adored me so it was hard to keep him away from me. It wasn't easy for them, but they had family to help out and support them. My parents kept strong for me and held onto faith that I would be ok. My parents didn't want to accept that something might happen to me.
In early February of 1988 I had my first open heart surgery called the Pulmonary Artery banding. It was to help the blood flow in my heart and lungs until I was old enough to have the full Fontan. The surgery went well. Though it was successful in its purpose it didn’t make it any easier on my parents and family. I was still a sick little baby, but my parents never lost hope that I would be ok! As for complications, I had one code blue called during my 10 day recovery because I pulled out my breathing tube, but after that all was well! Soon after returning home I got dangerously sick with RSV! I was taken back to Children's Hospital and admitted. I spent about a month recovering from RSV on lots of medication! My dad tells me my crib has a bubble thingy over it to help me breathe and for breathing treatments (I don’t know the proper name for it). After returning home from recovering everything went well and my parents as well as my older brother adjusted. I was born with an eye muscle disease called Estropia (“Crossed Eyes”), I did patch therapy as a baby and then had my first eye muscle surgery at 18 months old; which was during the time in between my two open heart surgeries.
On November 21, 1989, my parents handed me over to the doctors for my second and riskiest open heart surgery, the Fontan Procedure. It had only been a month before during a heart cauterization that I developed a blood clot in my right leg and scared my parents, now it was one of the biggest days for them and for me. The Fontan was a surgery still a fairly new operation (about 15yrs old). This surgery was either going save my life, take my life, or have my parents looking for other options and my parents knew that all too well. A 50/50 chance is what the doctors bluntly told my parents, but my parents hung onto to positive 50%.
My parents had a lot of faith in the doctors and God that I would come out ok. I came out of surgery just fine. As far as complications that I had from this surgery, other than them having to put in a new chest tube (putting in while my parents held me down as they didn’t have enough nurses around at the time) and me being on a special diet (medium chain triglyceride diet), I didn't have any. I was discharged from the hospital exactly one month after my surgery which was four days before Christmas 1989. My family had every reason to celebrate. I did too! I got out my mom’s lotion the day I got home and went to town putting it all over myself. I was happy and alive. What more could my parents and family want?
After that second surgery I was as healthy you can be having a heart condition. I had years in between the second surgery and any minor concerns. I went to my cardiologist once a year and was on a few medications, other than that I was doing great. I had another eye muscle surgery when I was 8, I got four stitches in the my bottom lip from getting hit be a swing when I was 7, and was diagnosed with minor scoliosis at 14yrs. old. I got a little brother, named Aaron, when I was eleven and that was wonderful; I'd hold him as much as I could and he and I are very close. When I was six my mom got me into acting classes; she signed me up to the family theater in our city. I was in plays till I was twelve when the family theatre group closed. I enjoyed being on stage and it made me feel on top of the world. It is something I will always remember; even my mom was in the plays with me! For my parents and family to see me up on stage happy and alive was so extremely exciting for them. I also played bowling which I loved and years later I ended up being on my high school girl’s varsity bowling team. As I got older I knew I was different, my parents explained the best they can to a young child what was wrong with my heart. My parents always supported and encouraged me. The always would let me know how special I was and God had big plans for me. My mom would always tell me to listen to my body, if I was tired in an activity then stop or if I didn’t feel right then tell someone right away. I became very good at this. I lived a pretty normal life for a long time. I was very lucky! For the most part I was a very happy child that loved to talk, to people I knew anyways (I was shy around people I didn't know). Socially I had some trouble and go teased a lot (I was shy, had glasses, couldn’t keep up with other kids during gym/recess), but I did end up making a friend or two. I was happy about that. Even in tough times I tried to have a positive outlook and have a smile on my face. My parents never let me give up on things and gave me a pretty “normal” childhood. I’m thankful for that!
It wasn’t till the summer I turned 16 where my health changed for me; it was a turning point so to speak. I broke out into hives all over my body for no reason early one morning and I was so scared. I remember going from doctor to doctor and even my cardiologist, getting my blood taken, getting my heart looked at, everything to find out what was wrong. I was in so much pain because the hives were on my joints too and it was hard to move. Finally, after three months of steroids, being off my heart medications, and being watched 24/7 the hives went away and to this day no one has a clue what happened. From then I realized that anything can happen and I was so grateful and blessed for what I have. I held onto my faith in God, but there were times I questioned everything (I still do), but I try to find peace. Since then life has not been easy for me, but it certainly can be worse and I don’t take a thing for granted. I was diagnosed with exercise and stress induced Super Ventricular Tachycardia (SVT’s aka very fast heart rate), when I was 18 and I’m on a low dose of a beta-blocker for that (which calms the vessels in my heart so it doesn’t race). When I first got the symptoms of the SVT’s it was scary for me. I had night sweats, bad chest pain, hard to breath, and harder to do daily activates. I was so scared that I didn’t even tell my parents right away, I know now that I should have and I should ALWAYS tell someone if something isn’t right, but it was hard for me to accept that something was wrong. Since the beta-blockers I have been SO much better, but I still struggle with on and off chest pain. It can get frustrating, but I deal with it the best way I can.
Then, during my freshman year in college I had a weird episode of the chills, being really hot, chest pain, shaking, light headed, and I was pale looking. This happened at school and I was scared. My mom picked me up and after taking a long nap I was fine. I went in to see my cardiologist a month later and told him. He said if they don’t happen all the time then it is most likely stress, but to keep an eye on it. Well, months later, during my second year of college, it happened again and again. Then, it was just the chest pain part. I went in to see him again and he linked the pieces together… these episodes always happened right before my period or the first day of my period. It varies from month to month, most months aren’t that bad. It always just lasts a day. My cardiologist said that other CHD girls can have bad periods too. It’s just something I have to live with now.

Since then, I’ve also been diagnosed with muscle spasms (a year ago), mostly on the left side of my body that is usually stress or anxiety induced. I had my third eye surgery in July of 2008 and all went well. I’ve had one trip to the ER of Children’s in July of 2009 due to a bad intestinal infection.

Every day I have little reminders that I have a CHD; from my scars to my medications to my on and off pain to getting tired easily. They remind me that each day I’m ever so blessed and grateful to be alive. These reminders also keep fear with me, fear of the unknown and worry, things that are so hard to push completely out of my mind. This CHD has impacted my personality in many ways. My CHD has helped in my very emotional personality, my stubbornness, my bluntness about things, my kindness, and my care for others. It has taught me to be more understanding of people around me, has taught me not to take life for granted, to love the people you care about with all you heart, and to enjoy the simple things in life. It has given me a motivation to help others and to always have faith. I’m thankful for my life; I’ve been very blessed in so many ways. I have two amazing parents who have done SO much for me over the years to bring me to this point in my life, the fought so hard to get me here healthy and happy. For that I will always be internally grateful to my parents, I love them SO VERY much!! I also have a wonderful family including two grandparents, two brothers, and a niece who I love dearly!! I also have an amazingly supportive and loving boyfriend, named Christopher, whom I love so much!

I have big plans for my future and though I have a tendency to think negatively, I’ve been trying my hardest to think more positively! I’m in my last year of college getting a Psychology degree. In my spare time I hang out with my boyfriend, I love to write, play video games with my boyfriend, watch movies, be with family, help out in the CHD Community. I hope to someday get married and have kids. I also hope to set up my own CHD organization one day. Until then I will keep spreading CHD Awareness and telling my story!! I have LOTS of Hope that ONE DAY CHDs will be more publicized and researched so that more children will be saved!! My CHD will never go away, but I will take what I can from it and keep living my life to the fullest with lots of smiles, laughs, love, and special memories. I try not to let me CHD define me because I’m so much more than a CHD. I LOVE my life and I consider my mended heart a gift!!

Wear Lilac Friday, July 30 to Support TS Awareness!

Avery and Mommy and Lilac/Purple!


Sweet Addison Paul wore Lilac for Avery today- too stinkin' cute!

The Adorable Rosie in her Lilac!

Avery's Grammy wore Lilac too!


Avery and I wore our Lilac today in honor of TS Awareness! (Well, she wore purple.)Did you wear yours??? If anyone has any pics, email them so I can post them please!

See this Link on FB:
http://www.facebook.com/home.php?#!/event.php?eid=133013253401342&ref=ts

‎"Have faith in God," Jesus answered. (Mark 11:22)

O LORD my God, I called to you for help and you healed me. (Psalm 30:2)

Mrs. Linda Turner

Cross Healed Hearts Pillows by Mrs. Linda Turner!!










Let me just tell you a little about Mrs. Linda. Our relationship began when I was in the 6th grade at Warrenton Elementary- Mrs. Linda was my awesome teacher. I hope that my students see me the way I saw her. She really has a love for children, and her students knew it. She was creative and fun, and created a great learning environment. I have never been a math enthusiast, but I loved her class. I had just come to Warrenton, and thankfully, Mrs. Linda's daughter Suzanna, was also in the 6th grade. We became close friends, and have since graduated High School, been college roommates, and remained close friends throughout the years. When I returned home to Vicksburg a few years ago, I was lucky enough to land a job at VIS where Mrs. Linda was lead teacher. She really took care of me there, and it was so cool to work with someone I admired so much as my own teacher. Since I became pregnant with Avery, Mrs. Linda has prayed for us and even created a spirit of prayer for us at Redwood which was her current school. She has since made so many special, beautiful little things for Avery (some of which I have put pics of on this post). When I contacted her regarding Cross Healed Hearts, she didn't even pause before offering her help and ideas. She sent me a logo within a day, and started on pillows shortly after! It is just such a blessing to have people like Mrs. Linda in my life. She has a very big heart, and never expects anything in return for the things she does. Thank you, Mrs. Linda, for ALL that you do!
Just a few of the things Mrs. Linda has done for Avery...

TS Presentation to 3rd Grade Class

I found this online, and thought it was neat.




Turner Syndrome Class Presentation and Fact Sheet
Posted Oct 04 2009 11:12pm
A fellow mom of a daughter with Turner Syndrome shared a class presentation that she gave her daughters school and I would like to share it here as well and she has given me permission to do so.
_________________________________________




Below is the presentation we shared with the 3rd grade classes at Madisyn's school. If you think this is something that may help your child, feel free to copy and paste and edit as needed. This was a long thought out process. We knew when the time was right to share....Madisyn's teacher was very supportive feeling it would be beneficial, and it was. It may not be for everyone, but it was a great experience for Madisyn and her classmates.
Blessings, Jen

(Jen)
Raise your hand if you or someone
you know has allergies?
Raise your hands if you or someone
you know has asthma?

(Madisyn)
Raise your hand if you or someone you know wears glasses or
has braces on their teeth?

We all know someone who has something right?

(Jen)
Raise your hand if you know someone
who has Turner Syndrome?

(Madisyn)
My name is Madisyn, and if you know me you do know someone
who has Turner Syndrome.

(Jen)
Madisyn was diagnosed with TS when she was 2 days old.
Not only am I Madisyn and Blakes mom, but I am the President of the Chicago area TS Society. Several families and I are publishing a book. Boys can not have TS, so this is why we decided the name of the book would be called "The Turner Girl Club.

(Madisyn)
I have many friends who also have TS just like me. We just had a spa event where we got to have our nails and make up done with our moms.
I brought some pictures of me and my friends and our moms to show you.

(Jen)
When Madisyn was born her cry was not very loud and her feet were swollen. This led doctors to check her blood pressure and do tests on Madisyn's heart. Doctors noticed Madisyn has 2 valves in
her heart valve instead of 3 like you and I have.
She also had a narrowing of her aorta (our Aorta is the
main vessel of our heart). (Bring a visual picture of heart)

These heart findings led doctors to do a special blood test which told us Madisyn had TS.
Madisyn is our miracle.
TS occurs in 1 out of 2000 baby girl births. (show bowl of 20000 pastel M&M's. "if all these m&m's were girls, only one would have TS )
(4 bags = 2000)

Some of you may notice Madisyn does not hang from the monkey bars outside, or that she may not keep up during running activities in comparison to classmates or that she has a water bottle with at her desk. Her doctor wants Madisyn to stay hydrated which means to keep enough fluids in her body to prevent fainting episodes. He also does not want her to do activities that cause extreme exhaustion or lift really heavy things. It might put too much strain on her heart. Instead of doing really strenuous activities, Madisyn does get to ride horses once a week at a place in Maple Park.

Madisyn sees her cardiologist(can you guys say cardiologist?) This is Madisyn's doctor who monitors her heart, once a year. He says she is doing great. She can run and play just like other kids, but knows when she needs to rest. Madisyn takes a pill every day to help slow her heart rate down, and keep her blood pressure in check.

(Miss Terry) (Ms. Lewis or Ms. Ricker)
How many of you know different kinds of language within the English language? Ie. Sign language, brail.
Does anyone know what non-verbal/body languag is? Mrs. Campbell and I are going to show you examples of non-verbal/body language.

(Miss Terry) (Ms. Lewis or Ms. Ricker)
Many people who have TS are very good at reading and comprehending books, and excel at vocabulary words. In fact, Madisyn's mom told me Madisyn can be listening to a book in her CD player and physically read a different book at the same time, and know everything that is going on in both. Pretty amazing huh?

(Jen)
Sometimes girls who have Turner Syndrome have difficulty understanding body language and peoples facial expressions. Things like crossing your arms, rolling your eyes or making a face at Madisyn can be very hard for her to interpret. It is best to use nice words and talk to Madisyn since vocabulary and verbal language is one of her strengths.

(Miss Terry, Ms. Lewis or Ms. Ricker)
Some girls and women who have TS have difficulty with balance
and judging how close or far they are to someone or something.
If Madisyn is standing too close to you and you would like her
to back up, how would you let her know what you want? Would you back away from her crossing your arms, or rolling your eyes? Or would you let her know what you want by asking her with nice words if she can back up a bit?

(Jen)
Sometimes girls who have TS feel awkward in social settings…..like when its appropriate to join in a conversation, to be careful not to interrupt in a conversation. It is admirable if you are able to notice when someone may be feeling awkward and to try to talk them through a situation and include that person.

(Jen)
When Madisyn was born she was 18 inches long. This is a bit smaller than
most babies. Madisyn has consistently been smaller than other kids her age.
Girls who have TS have trouble growing on their own. Every three months, Madisyn see's a doctor called an endocrinologist. Can you guys say Endocrinologist? This is a doctor who tells her how much medicine she needs to help her grow.

When we were very first informed of Madisyn's diagnosis after the doctor fully explained what TS was all about, he ended his conversation telling us the key to Madisyn's life will be unconditional love and acceptance. Isn't that what we all want? Whether we wear glasses or braces, whether we are tall, short, heavier or skinny and no matter what the color of our skin, we all just want to be accepted.

(Madisyn)
Every night before bed my mom or dad give me a shot. This medicine goes in my leg or hip. Some times it stings, but I count through it, stay brave and don't cry. I know it is helping me grow.

My mom and dad have taught me we are all different. It's what
makes life interesting. If everyone were the same, it would be boring.

My parents teach my brother and I that it is what is on the inside that really counts.

((((at the end of our presentation, we asked questions to see how much the students took in....it was amazing how much they understood. We handed out a small piece of candy to each student and a feathered butterfly - TS logo. We also gave each student a paper summerizing our presentation to take home and share with their families - all 3 classes were very accepting and Madisyn's teacher said she has noticed a difference in how students communicate with Madisyn. The school would like us to share this with all of the 4th grade classes at all 4 schools next year if Madisyn is okay with that.....this might be a good thing since they will all be together in junior high which are the toughest years in my opinion))))
And the fact sheet that they passed out which of course doesn't list everything or in detail as it is for children who dont need to know certain facts that may cause teasing (such fertility, menstruation etc.)

Turner Syndrome - Some Facts

Turner Syndrome = girls only. 1 out of 2000 girls has Turner Syndrome.
(this means that one m&m out of 5 huge bags of m&m which would have to be all girls would have TS)

Madisyn has many friends who have Turner Syndrome just like her.

Some characteristics of Turner Syndrome include

Specific heart problems - Madisyn has a bicuspid aortic valve instead of a tricuspid valve. (2 valves instead of 3) Madisyn sees her heart doctor (Cardiologist) to monitor her heart. Girls who have TS have an increased risk for high blood pressure. Madisyn takes a pill each day to keep her blood pressure and heart rate in check. No monkey bars or heavy lifting. Madisyn knows when she needs to rest.


Slow growth and/or short stature - The most common feature of TS is short stature. Madisyn just started taking medicine to help her grow. Her mom or dad give her a shot every night. She is brave and knows it will help her grow taller like her classmates. Madisyn sees a doctor called an Endocrinologist who helps monitor her growth.

Excellent verbal skills and reading abilities….Girls who have TS usually excel in their verbal skills. Madisyn can read one book and listen to a completely different book on CD and know what is happening in both.

Non-Verbal Language Difficulties - Non-verbal language poses a challenge to many girls who have TS. Madisyn has difficulty understanding people's body language and/or facial expressions. This can cause problems in social settings. Sometimes it is difficult for girls who have Turner Syndrome to join in on a conversation or they may interrupt a conversation without meaning to. It is best to use nice words to communicate with Madisyn since verbal language is one of her greatest strengths, and help them feel included.


Spatial-Temporal Processing Difficulties - imagining objects in relation to each other is often difficult for girls who have Turner Syndrome. This can cause problems with balance, solving some math problems as well as understanding a persons personal space. Sometimes Madisyn may stand very close to you without realizing she is in your space. It is best to ask her with nice words to please step back a bit.
The Butterfly is the United States Turner Syndrome Society logo.

Madisyn's mom Jennifer was the parent chair of the TSSMC. (Turner Syndrome Society of Metropolitan Chicago) She is proud of Madisyn. She and other families are in the process of publishing a book called "The Turner Girl Club".

Madisyn, her parents and members of the Turner Syndrome Society of Chicago thank you for helping us bring awareness to Turner Syndrome by sharing this paper with your family

Sweet Colleen

I came across the blog of Colleen Joyce, which can be found on this page under Turner's Syndrome links as well as Blogs We Follow. Colleen is only 15 years old, but is already creating awareness of Turner's Syndrome in a very honest and refreshing way. I am so excited to share her story, along with a question and answer session we had via email! God bless you Colleen for being such a positive role-model for our girls! We look forward to seeing you continue to do GREAT things!!


Colleen's Story:

My Life...I've known that I have TS since I was 3 years old. It was hard for my mom and dad when they found out. I was usually really sick which is where all the doctor visits came in. We would learn new information , like how tall I was, my general health, and how I was doing with the injections. But I got through all of those! I do have some difficulties in school too. Math is really hard for me. Like it probably is for most TS girls. I do like music. Country is my favorite. Country 92.5 is my favorite station. I won a lot of awards in elementary school (I go to Saint Joseph's High School now) so that makes me, my mom , and my dad very happy!! I do have some hearing problems and I can still hear well , but my ears usually get ear infections. Lucky I haven't had one in a while! I had nine(yes, nine!) sets of tubes.

The song you will hear playing on my blog is "Wonder" , by Natalie Merchant. It was a song that told my dad I was going to be ok. I , however , seem to like the song too. I actually think of how lucky I am when I hear it. It reminds me of , well ,me! The lyrics are really similar to how my life goes. My mom was the one who told me about the song,and the whole story about my dad and the song. The lyrics are below:

Wonder:

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way


EVERY TS GIRL'S SYMPTOMS ARE DIFFERENT. I had swollen feet at birth(doctors thought it was poor circulation) , I obviously have a short stature (but with my growth hormones I will hopefully reach 5'1 or 5'2) . I have a low hairline with no webbed neck. I have had zillions of ear infections, but have been very lucky the last few years. I do have a small heart condition. It just means I need to take medication before having my teeth cleaned. My biggest challenge, I feel, is my math weakness. It's a pain in the butt!! I take an estrogen patch(on my hip) so I will be able to develop normally.

From Colleen...
I will be 15 this September, starting my sophomore year at Saint Joseph High School in Trumbull, CT. I have a 93 GPA, and work very hard at my math skills. As you know, TS women can struggle with math. I have grown to 5'2 1/2, and will be finishing GH treatment this year. The shot never was a big deal for me. My butt has been a pin cushion for 10 years! Well worth the growth! =)

I never had the hydrops, but I have the webbed neck that no one ever notices. I also had the puffy feet at birth. I've always had a positive attitude about this stuff, but every once in a while I'll feel a little different (but don't most 15 year olds feel different anyway?).

Q&A Session:

1.Did you grow up feeling different from other girls your age because of your TS?

To be honest, yes, I did feel different from other girls. What helped me was my aunt and her condition, diabetes (she's had it since she was 7).

2.What are some things your parents did to encourage you?

They treated me no different than my other siblings, a brother (17), and sister (13). They consider us all brats! lol!

3.Do you think it is important for a small child to grow up aware of her TS? Why?

YES! She is who she is, and she should be proud.....she's a survivor! My mother has always told me that I'll be lucky someday to go anywhere and pick my baby (infertility)!

4.What do you think would help moms tell the daughters about TS and its effects?

My parents have always referred to my doc appointments as "tune-ups".

5.What is one thing you'd like everyone to know about TS from someone who has grown up with it?

You're not mentally challenged, you're very, very smart! My IQ is 117!

6.Do you feel having TS has held you back in any way physically, mentally, or emotionally?

I don't like to get involved with sports a lot because of my two heart conditions. I keep fit by walking (cardio) and eating well.

7.What was your biggest fear as a child when you became aware of your TS?

That I was going to die! I know now that I could live to be a very old lady with a lot of cats! lol!

8.Do you have any heart, kidney, sight, hearing, or other health problems associated with TS?

Yes. I have the heart problems (Bicuspid Aortal Valve and Mitrovalve Prolapse), so I have to have an MRA (MRI of the heart) every couple of years. My kidneys are normal. I've also had hearing problems since birth. 9 sets of tubes have been put in! My ears have been tube free for 5 years now! My hearing is just under the normal range. No big deal!

Rosie's Story

Our Christmas Rose
By: Louise

Our first child Matthew was born in 2004. The pregnancy and birth were easy and there were no problems or complications. So when we attended our 12 week scan during my second pregnancy in the Summer 2006, we were not expecting to have any difficulties. The sonographer began the scan and after a short while she said `I'm sorry but there's a problem`.

When we asked what sort of problem she was very vague, stating the baby had a growth on its neck which could be an indicator of something minor or something very major. I burst into tears, my husband looked stunned and my toddler looked confused. The delivery of this news was done in a `matter of fact` voice with no sympathy and I will never forget the callousness of this particular sonographer.

We were led into a room - the` bad news room` with a low table and box of tissues. A friendly midwife came and said she would try and find out more about what was wrong, but it may take a while as she needed to speak to a consultant at a neighbouring hospital. Time ticked by, we went for a walk and returned, still no contact. In total we were left for about 1 and a half hours, feeling totally devastated but trying to keep smiling for the sake of our son who didn’t understand.

Finally we were told that we could visit the consultant that afternoon. So after returning home and trying to eat something, we went off to another hospital to see this gentleman. He immediately put us at ease, he explained the reasons why baby may have this growth and told us it was called a Cystic Hygroma. It could have meant baby had a structural problem, eg in the heart/kidneys or a chromosomal disorder. He brought in a small scanner and I had my second scan of the day. After a short time he turned the screen round and explained that in addition to the Hygroma, the baby also had a lot of fluid in the chest cavity - Hydrops. The two conditions together meant the outcome, in his words was` very grave` and he was `very worried about this baby`. He reassured us that we were not at fault and it was just `one of those things`, he suggested that we attend another hospital the following week where we could have a more detailed scan.

So we had a few days wait (during which time we `celebrated` my birthday). We visited the Foetal Medicine dept of our nearby City Hospital, where we endured a long one hour wait to see someone. Finally I was led into a room for another scan, our first concern was that the baby was still alive. I immediately saw the heart beating and limbs moving. The specialist spent 5-10 minutes scanning the baby, then told me he would join us in a neighbouring room. He entered the room and advised that the situation was very serious and it was extremely unlikely the baby would survive. This was mainly because of the chest fluid which would eventually prevent the heart from beating. He re-iterated that the baby may have a structural problem and/or a chromosonal disorder such as Downs, Edwards or Turners. He gave me a letter to go in my file which stated `there is a 95% chance of foetal demise ... probably within the next few weeks`. We were told to return in one weeks time.

The following week we went through the same routine, the specialist advised that the baby was a little worse and there was nothing that could be done. He talked about tissue testing should I miscarry. He approached the subject of terminating but my husband and I had decided that we were going to give the baby a chance, we would then feel we had done all we could.

So we went back to the original local consultant and advised we wished to continue with the pregnancy. He supported us in this decision and we planned regular scans to monitor the baby's progress. The scans were very hard for me because at this early stage I could not feel the baby move so had no idea if it had died - I was advised it was very likely that it would die and I wouldn’t miscarry, just find out at the scan.

I turned to the internet for more information, this decision was a mixed blessing as I found the wonderful positive Hygroma/Hydrops stories on this website, but much of the information I found was very depressing, giving survival statistics of 1%, or more often, - nil.

As the weeks passed by my scans followed a routine where my consultant would tell me that the baby's condition was the same, but never worse, never better. But always, he commented that the baby was very active and as week 17 came and went I felt baby's movements for myself which was a huge relief. My husband remained stoically positive refusing to believe the baby would ever die. I had some bleak moments though and found myself having to prepare for a miscarriage eg I asked the midwife what I should do with the foetus and was worried that we would not get a burial if the baby died before 24 weeks.

Around week 20 I attended a scan as usual however my consultant was away. Another lady scanned me and then turned the screen round and pointed out baby's arms and legs. Yes, I said but what about the chest fluid? She frowned and turned the screen back, scanned me some more and then said I cannot see any fluid. I was astounded and asked if she was sure - it really could be a life and death question! She was sure but advised that my consultant could check at my routine scan the following week!

To make matters worse that scan was put back a further few days, so I was frantic by the time I got to see my regular consultant. I explained what had happened with the stand in sonographer and he nodded and said he would take a look. After a short while he turned the screen to me and said he agreed, the fluid had gone. It was unbelievable. He too seemed very surprised but also remained cautious saying we were not out of the woods. The baby still had the Hygroma, although the Hydrops was always the more worrying aspect.

We were so shocked but ecstatic at the same time. We told very few people in case we jinxed the good news and we continued with the scans. My detailed 21 week scan showed the brain and heart were perfect, and baby was a SHE!

We began to investigate the three possible chromosomal conditions, in particular Turners as it only affects females. My consultant was keen that I had an amnio to find out for sure what the problem was, but we refused, preferring to let nature take its course. In any case, we had no intention of aborting, whatever was wrong, so an amnio would not change anything.

So, the weekly scans continued and baby continued to grow and thrive, the Hygroma remained but was not of too much concern. At around week 30, my consultant noticed a drop in the amniotic fluid and the baby's growth was a little behind. He advised that we should consider an early delivery, perhaps at 34 weeks (Christmas week!)

I had steroid injections to prepare her lungs should delivery take place early, After attending a scan at 33+2 weeks I was told that I really needed to have her that day or the following day since the amniotic fluid was so low. I wasn’t allowed home and was admitted into hospital immediately.

My husband had to gather together some things from home and organise childcare, I was then scheduled for a section the following day.

Rose Beatrice Hope was born on 15 December 2006 weighing 4lb 4 oz. She scored top marks on her Apgar straight away, breathed independently and went to special care unit for temperature regulation and feeding requirements only. Her hands and feet were quite puffy which is a sign of Turners Syndrome, however her Hygroma had almost completely gone, with just a little loose neck skin (which will tighten over time we're told).

I remained in hospital for a week, she remained a further 3 weeks, but progressed really well and was only kept in while I tried to establish breast feeding. The news came a few days after her birth that she did indeed have Turners - the news was delivered in a very grave manner but we were so RELIEVED. She was alive and that was all that mattered, TS is not a big issue as far as we are concerned.

She is now 7 months old, she has no health problems whatsoever and is a normal happy baby. We are grateful for the medical advice we received, especially from our regular consultant, and the positive thinking from our family and friends which we believe contributed to Rosie's survival against the odds.

Louise is very interested in offering hope to parents dealing with a prenatal cystic hygroma diagnosis, as well as to those with any number of difficult prenatal diagnoses in the UK. Please visit her website and email her for more information.
The link to her page is listed under Blogs We Follow. Thank you Louise!!

Help us with TS Awareness- Friday, July 30!

Please wear lilac (if no lilac in your closet, may be a shade of purple?) on Friday in honor of those living with Turner's Syndrome to raise awareness of TS! Avery and I will be wearing ours!! If you take pics, be sure to send them to me for posting!! Let's get the word out!!

Fetal Cystic Hygroma

In Avery's case, the very large cystic hygroma was found at 18 weeks gestation, which means it was very unlikely to resolve itself. It was also septated. Fetal Hydrops would have been the likely result. The reason her survival rate was so very low also had to do with kidney, heart, and bowel problems in utero along with her Turner's. The Journal of Clinical Endocrinology & Metabolism states the following: "It has been estimated that only about 1% of 45X fetuses survive to term and that as many as 10% of spontaneous miscarriages have a 45X karyotype." (45X refers to Turner's Syndrome)


Definition: the term "hygroma" means moist tumor. cystic hygromas are anomalies of the lymphatic system characterized by single or multiple cysts within the soft tissues, usually involving the neck.

From: Office of Rare Diseases (ORD) of the National Institutes of Health (NIH:
Fetal cystic hygroma is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Fetal cystic hygroma, or a subtype of Fetal cystic hygroma, affects less than 200,000 people in the US population.




This information taken from the following:

Department of Human Genetics
Division of Medical Genetics
www.genetics.emory.edu



Cystic hygromas are fluid-filled sacs that result from a blockage in the lymphatic system. The lymphatic system is a network of vessels that maintains fluids in the blood, as well as transports fats and immune system cells. Cystic hygromas are single or multiple cysts found mostly in the neck region. A cystic hygroma can be present as a birth defect (congenital) or develop at any time during a person’s life. A cystic hygroma in a developing baby can progress to hydrops (an excess amount of fluid in the body) and eventually fetal death. Some cases of congenital cystic hygromas resolve leading to webbed neck, edema (swelling), and a lymphangioma (a benign yellowish-tan tumor on the skin composed of swollen lymph vessels). In other instances the hygroma can progress in size to become larger than the fetus.
Cystic hygromas occur in approximately 1% of fetuses between weeks 9 and 16 of pregnancy

Causes:
Cystic hygromas can occur as an isolated finding or in association with other birth defect as part of a syndrome. They result from environmental factors, genetic factors, or unknown factors.

Environmental causes for cystic hygroma include:
• Maternal viral infections, such as Parvovirus of Fifth’s disease
• Maternal substance abuse, such as abuse of alcohol

Genetic syndromes with cystic hygroma as a clinical feature:
• The majority of prenatally diagnosed cystic hygromas are associated with Turner syndrome,a chromosome abnormality in which a female has only one X chromosome instead of two.
• Chromosome abnormalities such as trisomies 13, 18, and 21
• Noonan syndrome
The pattern of inheritance for these syndromes varies depending upon the specific syndrome.Isolated cystic hygroma can be inherited as an autosomal recessive disorder for which parents are “silent” carriers. Finally, a cystic hygroma can occur from an unknown cause.

Testing:
Because the risk for a chromosome abnormality approaches 50% when a cystic hygroma is found prenatally, amniocentesis or CVS (chorionic villus sampling) can be performed to diagnose these conditions. If a genetic syndrome is suspected, test availability depends on the specific disorder. Maternal viral studies may also be considered if hydrops is present or maternal exposure can be
documented.

Work up for a prenatally diagnosed cystic hygroma includes:
• A detailed ultrasound, including fetal echocardiogram, to look for other anomalies that may indicate the cause for the hygroma
• A complete family history to determine if testing is indicated for hereditary syndromes.
• Amniocentesis or CVS to look for chromosome abnormalities or a specific genetic syndrome. Viral studies on amniotic fluid can be performed if indicated by the presence of hydrops.(Maternal serum screening does not help in determining the prognosis for a fetus with a cystic hygroma.)
• Periodic ultrasound evaluations are necessary to look for resolution of the cystic hygroma and/or development of other anomalies or fetal hydrops.

In the event of a fetal demise, a complete post-mortem exam (autopsy) is helpful to determine risks to future pregnancies.

Prognosis:
In some situations, a cystic hygroma can be present in a healthy baby. If a chromosome abnormality is not found in the fetus, the outcome is generally better than for those who do have a chromosome abnormality. If a cystic hygroma is an isolated finding that resolves around 18-20 weeks gestation and the fetus has normal chromosomes, the outcome is good for 54-80% of these cases. In cases in which an isolated cystic hygroma does not resolve by 20 weeks gestation, 2-9% have a good
outcome. Overall, there is generally a poor prognosis associated with the prenatal finding of cystic hygroma. Studies have indicated that smaller cystic hygromas are more likely to resolve. Oligohydramnios (not enough amniotic fluid) or polyhydramnios (too much amniotic fluid) predicts a poor outcome. Hydrops occurs 22-76% of the time with a cystic hygroma and is almost always associated with miscarriage or fetal death.

Treatment:
A baby with a prenatally diagnosed cystic hygroma should be delivered in a major medical center equipped to deal with neonatal complications. An obstetrician usually decides the method of delivery. If the cystic hygroma is large, a cesarean section may be performed. After birth, infants with persistent cystic hygroma must be monitored for airway obstruction. A thin needle may be used to reduce the volume of the cystic hygroma to prevent facial deformities and airway obstruction. Close observation of the baby by a neonatalogist after birth is recommended.If resolution of the cystic hygroma does not occur before birth, a pediatric surgeon should be
consulted.Cystic hygromas that develop in the third trimester (after thirty weeks gestation) or in the postnatal period are usually not associated with chromosome abnormalities. There is a chance of recurrence after surgical removal of the cystic hygroma. The chance of recurrence depends on the extent of the cystic hygroma and whether the wall of the cyst was able to be completely removed.

Here is another study I found online:
Abstract
Fetal cystic hygromas are congenital malformations of the lymphatic system appearing as single or multiloculated fluid-filled cavities, most often about the neck. They are thought to arise from failure of the lymphatic system to communicate with the venous system in the neck. They often progress to hydrops and cause fetal death. In an effort to delineate the cause and natural history of this disorder, we studied 15 consecutive cases of nuchal hygroma detected prenatally by ultrasound. None of the 15fetuses ultimately survived.
Thirteen fetuses were hydropic at the time of diagnosis; nine either died or were bradycardic in utero before abortion; one died a few hours after birth. Eleven fetuses (73 per cent) had karyotypes consistent with Turner's syndrome, and an additional fetus with female genitalia had a 46,XY karyotype. Three fetuses had 46,XX karyotypes, and two of these had multiple malformations.
When a hygroma is detected during fetal life, careful sonographic examination of the entire fetus, determination of the fetal karyotype, and an evaluation of the family history are indicated. (N Engl J Med 1983; 309:822–5.)
SOURCE INFORMATION
From the Departments of Obstetrics and Gynecology, Human Genetics, and Pathology, Yale–New Haven Medical Center. Address reprint requests to Dr. Chervenak at Mount Sinai School of Medicine, Department of Obstetrics and Gynecology, 1 Gustave Levy Pl., New York, NY 10029.

Dr. Ebeid

This is some information I found on Avery's cardiologist, Dr. Ebeid. I know that this does not even do him justice, because a lot of what I found was rather outdated. I know he has done so much more. Hopefully, I can get some newer information soon to post. Just know, that if it weren't for the close, careful supervision of Dr. Ebeid, our daughter wouldn't be here today. He demanded her last surgery, and when the surgeon got into the OR with Avery, he found that she was in even more desperate need of valve replacement. To put a long story short, he is an incredible pediatric cardiologist, and a nice and funny man to boot! I also have to mention his fabulous clinic nurse, Carley Garner. Nurse Carley is always loving, friendly, kind, and upbeat. She truly cares for her patients- that is very evident. I've never taken Avery to an appointment without Carley having something positive and sweet to say. She is a wonderful nurse to say the least!
We love you Dr. Ebeid and Nurse Carley!

Dr. Makram Ebeid



Cardiology, Cardiovascular Disease
UMC Division of Cardiology
2500 North State Street
Jackson, Mississippi 39216
Phone: (601) 984-5250
Fax: (601) 984-5283





Medical Education
• Ain shams Univeristy Faculty of Medicine, Cairo, Egypt , Dec 1979

Internship(s)
• , University of Miami, Miami, Florida, United States , Jul 1990 - Jun 1993
• , University of Mississippi School of Med., Jackson, Mississippi, United States , Jul 1989 - Jun 1990
• , University of Mississippi School of Med., Jackson, Mississippi, United States , Jul 1987 - Jun 1989
• , University of Mississippi School of Med., Jackson, Mississippi, United States , Jul 1986 - Jun 1987

Fellowship(s)
• , University of Miami, School of Medicine, Miami, Florida, United States , Jul 1990 - Jun 1993
• , University of Mississippi Medical Center, Jackson, Mississippi, United States , Jul 1989 - Jun 1990

Professional Experience
• University of Mississippi Medical Center, Jackson, Mississippi, United States , Jun 1997 -
• River Oaks Hospital, Jackson, Mississippi, United States , Oct 1997 - Dec 2011
• Woman`s Hospital at River Oaks, Jackson, Mississippi, United States , Oct 1997 - Dec 2011
• Rush Foundation
• Central Mississippi Medical Center, Jackson, Mississippi, United States
• Forrest General Hospital, Hattiesburg, Mississippi, United States
• University of MS Medical Center, Jackson, Mississippi, United States
• MS Baptist Health System, Jackson, Mississippi, United States

License(s)
• Florida
• Mississippi
• Ohio

Board Certification(s)
• American Board of Pediatrics , Oct 1989 - Dec 1996
• American Board of Pediatrics/Pediatric Cardiology , Aug 1994 - Dec 2015






The following is an article from UMC news that dates back to 2007. This is Avery's cardiologist, Dr. Ebeid, whom we love! Sometimes I don't think UMC gets enough credit for its accomplishments, and there are many, many fantastic doctors in this facility.




REVOLUTIONARY PROCEDURE REPAIRS VSD WITHOUT OPEN HEART SURGERY


Dr. Makram Ebeid, associate professor of pediatrics, is among the first in the Southeast to close a hole in the lower pumping chamber of a child’s heart without performing open heart surgery.
An 8-year-old girl who was born with a hole in her heart or what is known as a ventricular septal defect (VSD) needed the hole repaired in the lower pumping chambers of the heart.
Ebeid is one of a very few physicians in the United States certified to close muscular VSDs using nonsurgical techniques.
In a healthy heart, a wall separates the left and right ventricles, the heart’s two pumping chambers. The left ventricle pumps oxygen-rich blood to the rest of the body. The right ventricle takes in the blood that has circulated through the body and sends it on to the lungs to be re-oxygenated.
However, only some of the oxygen-rich blood gets sent through the body when a VSD is present. The rest leaks through the hole, creating a dangerously inefficient loop from the left ventricle to the right ventricle to the lungs and back to the left ventricle again.
Because the child had open heart surgery just a few years ago and numerous other health problems, Ebeid said he believed she would be better served with this new procedure. But first, he had to have the U.S. Food and Drug Administration (FDA) approve this special “compassionate use” of the new device, the Amplatzer Membranous VSD Occluder, to close the hole.
The FDA has not given approval for the device to become commercially available because there have not been enough clinical trials, Ebeid said. The procedure has not received FDA approval for regular use, but the FDA did agree that this was a better option for this child.
“We obtained special permission from the FDA to perform the procedure here because the child has other risk factors which make surgery of significant risk,” he said.
Ebeid deployed the occluder to expand each disc on either side of the defect, closing off the hole. He implanted the device using a catheter through the leg without opening the chest and avoiding the bypassmachine.
“Traditionally, the only way we could close it was with surgery - open heart surgery,” he said. “But this is a much safer procedure, especially for this patient.
“It also was a very long procedure, but it was done in the cath lab and the child was able to go home a few days later.”
It is estimated that up to one percent of babies are born with this condition, according to Ebeid.
“It is currently being tested in Europe, but it probably will not become commercially available for a few more years. However, we hope clinical trials will start soon in the United States.”
Until then, Ebeid said he will seek approval if there is not another option for a patient.
“We do have patients waiting for the device,” he said.
—Jenny Woodruff (5-14-07)

Avery's First Christmas- Santa Letter

Dear Avery,
I came for a visit, and was so thrilled to see, you sleeping so well- you’re strong and healthy. I know you are one special blessing on my good list, and as you were dreaming of sugarplums, your forehead I kissed. God has taken care of you from the beginning, and there are so many hearts on earth you are winning. Keep smiling, laughing, growing, and such- you’re a blessing to us all and we love you so much. Until next year when we meet again, I’ll be praying for you until the day’s end. I left some special gifts for you to enjoy, but remember that the meaning of Christmas has nothing to do with a toy. It is all about Jesus and the gift our God gave, He came to the world for our life to save. He is always with you, your mom and your dad, and he will comfort you at times when you feel sad. I will be watching to make sure you are nice, but I know my sweet angel Avery is made of sugar and spice. Merry Christmas from Santa you precious little one, enjoy this time of year- make sure to have fun!
Love,
Santa Clause
Christmas 2009

Avery's 1st Birthday- Poems

Avery’s 1st Birthday Announcement Poem:

Little Avery Sweet and Small,
She’s Been a Blessing to us All.
Clapping, Crawling, Standing and Such,
She’s Happy, Healthy, and Doing so Much!
Now She’s One, Oh Yes, It’s True,
We Owe it All to God and Help From You!

Here is a little poem I wrote for her Birthday Scrapbook using the letters of her name:

Angel from above
Victoriously overcoming the odds
Ebullient and full of smiles
Renewing the faith of others
You are a miracle!

Avery's Book

This is a book I wrote for Avery before I knew for sure she would live. I was trying to think positively! I thought I could read it to her when she got here, and one day she'd understand just how God takes care of us all. Here it is, minus the pictures!

"The Lily's Prayer"

Once upon a time, there was a yellow lily that lived in a beautiful field. God always took care of this lily. He planted her in good, fertile soil that allowed her to develop into a strong flower. Whenever the lily was thirsty, God gave her rain to quench her thirst. Whenever she began to wilt, God gave her sunlight to renew her strength. The lily was truly happy being in the beautiful field, but she began to long for a little flower of her own to care for. She knew that God always gave her the desires of her heart when she asked for things in prayer, so she prayed hard, hoping it was in God’s plan to fulfill her wish. The lily waited and waited, and even though it seemed like her prayer wasn’t heard, she trusted that God would answer her when the time was right.

One morning, when the lily awoke from a peaceful sleep, she could not believe her eyes. In front of her, lay a tiny seed- God had answered her prayers! She quickly took the seed in her arms and planted it in the rich soil near her. Once she was done, the lily praised God for the blessings he’d bestowed upon her. She began to pray that her little seed would grow healthy and strong. The lily was the happiest she’d ever been, and couldn’t believe her dream had finally come true.

Once again, God cared for both the lily and her seed. He gave them water and sunlight whenever they needed it, and kept them strong and healthy. The lily would fall asleep at night and dream of the day her seed would sprout from the soil the good Lord had blessed them with. Lily woke up one morning, and much to her surprise, a large rock lay over the very soil her little seed was planted in. She tried with all her might to move this rock, but it wouldn’t budge. She knew that with the rock on top of her seed, it wouldn’t receive the water and sunlight it needed to grow. The seed had begun to develop roots, but with the rock over her, she wouldn’t grow any further. The lily became very frightened and worried. Her seed would never be able to sprout from the ground as she had hoped.

The lily was very sad, and started to blame herself for planting her seed in that very spot. If only she’d chosen another place in the soil, her seed would have been fine. She began to cry out to God asking “Why? Why did this rock have to be placed on my seed?” Then the lily began to beg God to move this rock so her seed would have a chance to survive. In the lily’s weakest hour, the Lord spoke to her. The Lord said, “Lily, do you not remember who I am? I am the One who planted you in fertile soil so you may have the nutrients you need to flourish. I am the One who gave you rain when you were thirsty and the sunlight when you were wilting. I am also the One who loves you more than anyone else could love you. I am the One who gave you the desire of your heart with this very seed.” Once the lily heard God’s words, she began to remember all the things He had blessed her with. She felt ashamed that she had not trusted in Him. She remembered that she must trust in the Lord no matter what because He was in control. She knew God loved her and her seed very much. The lily prayed to God asking for His forgiveness, and began to depend on Him to take care of her tiny little seed. God was the only one who could help her.

As the lily looked around, she saw that all the flowers in the beautiful field were praying with her. She knew that God answered the prayers of His children, so she was very grateful to these flowers. Tired from a long day, the lily drifted off to sleep. Once again, when the lily awoke, she couldn’t believe her eyes. It was the rock- it had disappeared! She was so happy, she began to cry out thanking the Lord for what he had done. The lily praised God in the morning and she praised God in the evening. She continued to pray for her small seed, and waited patiently for it to sprout.

A few weeks later, the tiny seed sprouted from the ground. Whenever it needed water, God gave it rain. Whenever it needed strength, God gave it sunlight. The sprout grew and grew, and lily stood amazed as she watched the Lord work. All of the sudden, the small sprout revealed a bud, and was almost ready to bloom. The lily knew that one day soon, what was once a tiny seed in the ground, would bloom into a gorgeous flower for her to love and care for.

After a few days had passed, the time finally arrived. The tiny seed had sprouted and grown and bloomed for all the field to see. The lily had never seen a more awesome sight than the day her seed’s petals began to open. She could finally hold her little flower in her arms! As she held her little one, the lily praised the Lord for all He had done. The lily knew that she had a wonderful story to tell about her great God, and how he saved her special little seed. She began to share her story with everyone who would listen that they may know the awesome power of trusting in the one true God. From then on, the lily depended on God, and she and her precious little flower lived happily ever after.

The End

Cain Clinkscales

The following posts were taken from the blog of Catherine Clinkscales. Don't worry, Catherine told me I was welcome to "steal" from her blog! Catherine and I actually attended the same college, ULM, in Monroe, LA. With the suggestion of a mutual friend, Catherine contacted me recently on FB because we are now both raising children with congenital heart defects. I am so glad she did! Her story has touched my heart as I am sure it will touch yours. I hope to post continually about Cain and his progress. Catherine is now pregnant with her second child, a healthy baby girl, so Cain will soon have his own little sister! I know how terribly busy she must be, so I am taking things she's already written to post for now. Thanks Catherine!


http://clinkscalesfamily.blogspot.com/ is the link to the Clinkscales' Blog!



Finding Out The News- Cain's CHD:

I was 20 weeks into my pregnancy at the time of my 30th birthday. As a birthday present to myself, I scheduled an ultrasound on the day of my birthday, September 22nd. I was totally expecting it to be the best birthday present ever! How could it not be? I was going to find out the sex of our first child.

We were immediately elated to find out we are having a boy! However, we also received very sad news during this ultrasound. We found out that Cain has a rare congenital heart defect.

The following Thursday, September 25th, we had our first appointment with the Pediatric Heart Institute at Monroe Carell Jr. Children’s Hospital at Vanderbilt. We met with a pediatric cardiologist, Dr. Michael Liske, who performed a fetal echo. Afterwards, Dr. Liske sat down with Brad and me and explained to us that Cain has several congenital heart defects. The following are his defects.
1. Tricuspid atresia
2. Hypoplastic Right Ventricle
3. Ventricular Septal Defect
4. Transposition of the Great Arteries
5. A small aortic valve

As unlucky as this may all seem, we are very lucky for several reasons. One of those is the fact that we live in a town where we have access to a wonderful team of physicians who are dedicated to the care of patients with heart disease. We are also very lucky that the Children’s Hospital at Vanderbilt has a surgeon who performs surgeries on babies born with Hypoplastic Right Hearts. The surgeons name is Dr. David Bichell. He is the chief of Pediatric Cardiac Surgery at Vanderbilt and is the only surgeon in Nashville who performs the operations that Cain will need.

We were able to have a consult with Dr. Bichell on October 14th. He explained to us that Cain will have to undergo multiple surgeries after birth. As it stands now, he will have his first open heart surgery during his first week of life. They wait a few days after birth to let the lungs strengthen. The second surgery will occur at approximately 4-6 months. The first two surgeries are designed to temporarily relieve blood flow to and from the lungs. His third surgery will occur around 18 months and it is to improve overall circulation. The procedures do not cure the defects, but rather re-routes the blood flow around the defective areas. We were told Cain will be at high risk due to his number of complications. Essentially, when the procedures are completed, he will be functioning on the use of the left side of his heart only. We were also told there is a possibility that he will need a heart transplant later in life depending on the outcome of these procedures and how well his left ventricle holds up under the extra stress of supplying blood to the entire body.

So, with all of this said, I have decided to start a blog. We feel so grateful to have our family and friends. It is during times like this, we realize how truly blessed we are. We can’t thank each of you enough for your prayers and support thus far. My hope is for this blog to keep each of you updated on my pregnancy and updated on Cain’s progress.


A Later Post- Cain's Birth


During the last minutes of my pushing the NICU team had already arrived in our room and began getting prepared for Cain. As soon as Cain was here, he was handed off to this team of people and they immediately began working on him. I had hoped to be able to touch or hold him for at least one second but we had a very scary moment after his birth where he was not breathing on his own. Eventually, he had to be intubated. To this day I still have not heard him cry or had the chance to hold him. I can't wait for that day!!!
Since I didn't get to hold him before they took him to NICU, they held him up from across the room so I could get a good look at him. As you can see, he looked at me too.
Brad and my dad followed along with the NICU team as they rushed Cain over to the Children's Hospital. Actually, from what they both told me...the whole team as well as Brad and Dad were all running Cain over to NICU.


A few hours later I was able to be wheeled over to see Cain. I couldn't believe how beautiful he was. It's so hard to believe by looking at this precious baby who looks so perfect on the outside that he could possibly have so many heart defects going on inside his little body.
After Cain had been settled into NICU for awhile, Dr. Liske (Cain's pediatric cardiologist) came to access Cain's heart once more. From what we were told, everything looked the same as it did during the prenatal assesment. Cain would still be needing the same surgeries as previously discussed.
We stayed most of the evening in NICU just sitting and staring at Cain. After many hours we both knew we greatly needed to get some rest so we could stay strong for Cain. So after being awake for 39 hours straight we got what little rest we could. Actually, I think Brad said he rested well but I of course had the nurses coming in my room checking my vitals every few hours. Thank goodness I loved all of my nurses!

Raising Girls

I received the following information via email last year, and thought I'd post for those of us who are raising little girls in the difficult world of today.




Here are some of the strategies that God has revealed to us as we strive to protect our little girls from the evil of objectification, abuse and lust.
• Pray for her: It’s not long after that positive pregnancy test that a mother realizes the well-being and security of her child are almost entirely out of her hands. She is left with this choice: a lifetime of desperation, or a lifetime of prayer. May she always choose prayer, prayer and prayer.
• Let her be a little girl for years: in her toy-box and wardrobe. Encourage little girls to play like little girls: dolls, kitchen, doctor, school, blocks, and good-quality books. Be very careful about the TV programs, movies, websites, and video games to which your daughter is exposed. And enjoy dressing your sweetheart like a little girl. Research shows that dressing beyond her years is one of the top reasons for early promiscuity.
• Don’t make a big deal about body image, natural curiosity, or accidental innuendos: If you can cover over these things with grace, you will be protecting your daughter from shame and unnecessarily mature information which you feel is inappropriate for her premature world.
• Enjoy dressing modestly with her: In a funny way, it was rewarding when my 3 year-old saw a workout video for the first time and asked, Why are those ladies naked? Of course, they weren’t naked, but to her, they were wearing far fewer clothes than we wear. I was grateful for her innocence.
• Teach her to have compassion on (and to look away from) paper women who are objectifying themselves: you and your daughters should be in the habit of looking away from the same supermarket magazines that you would expect your sons and husbands to look away from as well. The airbrushed images are just as damaging to females as they are to men. (And by all means, remove these images from your coffee table, and take them out of your bathroom baskets! Yikes!)
• Celebrate the beauty of her inner-self, which is growing more Christ-like each day: Our little girls should be able to see the same beauty in us.
• Give her full permission to SCREAM at the top of her lungs whenever she is in danger: Her high-pitched ear-piercing scream might get on your last nerve, but it is a God-given device of protection. Explain to her that if she is ever in danger, she should scream her lungs out. Have a screaming match with her indoors and outdoors so that she is comfortable letting it rip in both environments. As she understands this amazing defense mechanism, you may be pleased to notice that she uses it more frugally around the house. It will be good for you both to remember that you are worth protecting.
• Plan activities and conversations that tie your heart to hers: May both Mommy and Daddy take her out on regular dates, establish bed-time traditions, talk to her at dinner time, enjoy her personality and love her no matter what the circumstance. Here are some books that have helped me to think about these things and to plan for the future: Noel Piper’s Treasuring God in Our Traditions, Dannah Gresh’s Secret Keeper Girl: 8 Great Dates for You and Your Daughter, and Carolyn Mahaney’s Girl Talk: Mother-Daughter Conversations on Biblical Womanhood.
• Fill her up with God’s glorious design for girlhood: Instead of focusing on all of the no’s and don’ts, celebrate the yes’s and do’s. We’ve greatly enjoyed God’s Wisdom for Little Girls: Virtues and Fun from Proverbs 31.

Tricuspid Atresia

Tricuspid Atresia:

In this condition, there's no tricuspid valve so no blood can flow from the right atrium to the right ventricle. As a result, the right ventricle is small and not fully developed. The child's survival depends on there being an opening in the wall between the atria (atrial septal defect) and usually an opening in the wall between the two ventricles (ventricular septal defect). As a result, the venous (bluish) blood that returns to the right atrium flows through the atrial septal defect and into the left atrium. There it mixes with oxygen-rich (red) blood from the lungs. Most of this poorly oxygenated mixture goes from the left ventricle into the aorta and on to the body. The rest flows through the ventricular septal defect into the small right ventricle, through the pulmonary artery and back to the lungs. Because of this abnormal circulation, the child looks blue.

Often in these children it's necessary to do a surgical shunting procedure to increase blood flow to the lungs. This reduces the cyanosis. Some children with tricuspid atresia have too much blood flowing to the lungs. They may need a procedure (pulmonary artery banding) to decrease blood flow to the lungs.

Other children with tricuspid atresia may have a more functional repair (Fontan procedure). In this, a connection is created between the right atrium and pulmonary artery. The atrial defect is also closed. This eliminates the cyanosis but, without a right ventricle that works normally, the heart can't work totally as it should.

Children with tricuspid atresia require lifelong follow-up by a cardiologist for repeated checks of how their heart is working. They also risk infection in the heart's valves (endocarditis) before and after treatment.

Hypoplastic Right Heart Syndrome

Hypoplastic Right Heart Syndrome:

Hypoplastic right heart syndrome (HRHS) refers to underdevelopment of the right sided structures of the heart. These defects cause inadequate blood flow to the lungs and thus, a blue or cyanotic infant. The major problem is pulmonary valve atresia (absence). This valve normally opens and closes to let blood flow to the pulmonary artery. Secondary problems include a very small (hypoplastic) right ventricle (lower chamber which normally pumps blood to the lungs); a small tricuspid valve (this valve allows blood to flow into the right ventricle) and a small (hypoplastic) pulmonary artery. Also, the blood flow into the coronary arteries may be abnormal causing damage to the heart muscle.

The infant is born with two connections that help blood flow. These are a foramen ovale (hole between the atria) and patent ductus arteriosus (or PDA, a blood vessel between the aorta and pulmonary artery). As these connections begin to close, the infant becomes critically ill.

Because the blue blood cannot pass through the right side of the heart to get to the lungs, it crosses into the left atrium and mixes with red blood returning from the lungs. This mixed blood is pumped out of the aorta. The only way in which blood gets to the lungs is through the PDA. The PDA must be maintained open with medicine (PGE1). Surgery is usually performed shortly after starting PGE1 to create an artificial connection (shunt) between the aorta and the pulmonary artery to deliver blood to the lungs.

Transposition of the Great Arteries

Transposition of the Great Arteries (TGA):
Normally, the pulmonary artery carries venous (bluish) blood from the right ventricle to the lungs to get oxygen. Then the aorta carries the oxygen-rich (red) blood from the left ventricle to the body. In transposition of the great arteries, the vessels are reversed. The aorta is connected to the right ventricle so that venous (bluish) blood is carried to the body. The pulmonary artery is attached to the left ventricle so that oxygen-rich (red) blood is carried back to the lungs.

Infants born with transposition survive only if they have one or more connections that let oxygen-rich (red) blood reach the body. These connections may be in the form of a hole between the two atria (atrial septal defect), the two ventricles (ventricular septal defect), or a vessel connecting the pulmonary artery with the aorta (patent ductus arteriosus). Most babies with transposition of the great arteries are extremely blue soon after birth because these connections are not adequate.
To improve the body's oxygen supply, a special procedure called balloon atrial septostomy is used during heart catheterization. It enlarges the atrial opening and helps the baby by reducing the cyanosis.

Two general types of surgery may be used to help correct the transposition. One common surgical procedure creates a tunnel inside the atria. It redirects oxygen-rich (red) blood to the right ventricle and aorta, and redirects venous (bluish) blood to the left ventricle and pulmonary artery. This operation is called a venous switch or intra-atrial baffle procedure. It has other names, too, including the Mustard procedure or the Senning procedure. It's usually done in infancy. Many factors, including the degree of cyanosis, determine how early in life a child may need surgery.

In another surgical procedure, the major arteries are switched. The aorta is connected to the left ventricle, which pumps oxygen-rich (red) blood to the body. The pulmonary artery is connected to the right ventricle, which pumps venous (bluish) blood to the lungs. This arterial switch procedure may be done in the first few weeks after birth or, depending on various factors, slightly later. If there's a large ventricular septal defect or other defects related to the transposition, the repair gets more complicated. Then other surgical procedures may be needed.
After surgery, the long-term outlook varies quite a bit. It depends largely on how severe the defects were before surgery. Lifelong follow-up is needed to be sure that any remaining defects or problems are treated properly. Children with transposition of the great arteries are at risk for getting an infection on the heart's walls or valves (endocarditis) before and after surgery.