Christopher's Story of Hope and Faith

What can one say after reading something like this? If you don't read another story on this blog, I pray you read this one. This is the kind of faith that we should all be praying to attain. Praise God in whatever storm you are in, and He will see you through. Thank you Kristi for strengthening my faith, as well as the faith of others through your story.







I am not sure where to start, but I guess letting you know how I learned about CHD. It was when my youngest son was born and my husband and I were told , quote, “your son has a lousy heart.” Those words were followed by, “there is nothing we can do, take him home and enjoy him.” Okay, I am thinking, “it’s 2008, what do you MEAN, you can’t fix his heart!?” People in general perceive CHD’s to be something like a minor hole in the heart, something that can be grown into, or “fixed”. The reality is that these children, SOME of them have the option of surgery, but not without lots of risk.
Christopher is one of the ones that surgery isn’t an option for. His condition of dialated left ventricular non compacted cardiomyopathy means that that when a fetus is in utero, their heart is sponge-like (non-compacted). When they are ready to be born the heart will compact and become more solidified like a muscle. CJ’s heart did not do that - resulting in the cardiomyopathy (weakness of the heart). It affects his right and left ventricles where it is very hard for his heart to pump and function correctly. Nothing is missing, out of place, or backwards. It’s the whole heart, all big, stretched out, and stiff. The only option given to us was a heart transplant, and we went to Arkansas Children's Hospital for a heart transplant work up. Lots of things happened there for the decision to be made to opt out, but I can guarantee you this was the hardest decision my husband and I could ever make. But in the end, the saying "It's not the number of breaths in your life that matter, it's the number of moments in your life that take your breath away." prevailed. Also, we knew that the prognosis wasn't good either way, and whatever God's will was, would be with or without a new heart.
There were a lot of folks, including family, who questioned our decision. I remember the moment I truly placed my son at God's feet and asked Him to do whatever was His will, I felt the biggest weight lifted off of me. We were ready to take our son home and let him live his life out comfortably, no matter how short it may be. He and his older brother, Justin, were finally given the opportunity to know one another finally. The closeness and special bond between them made our decision worth it alone.

We took him home at 45 days of age with the EF around 19% and he was admitted into hospice the next day.
The doctors told us that his prognosis was six months or less. We had to learn to accept that each day may be his last. It is a very hard thing looking into your beautiful child’s huge eyes and knowing he is just on loan for a short while. God is the only reason I made it through that period of time, and I never let go of my faith that God would make my baby whole and it was a win -win situation for him no matter what. The footprints prayer, well that was me, God literally carried me through. And I could not let the fear of "what if" rob the joy of "what is"!
I remember people saying "they don’t know how I could sleep at night". Well, in the beginning it wasn’t easy and the pulse ox was a huge comfort as I could listen to it beep and know his heart was still beating. But somewhere along the way, I grew more confident, and eventually the pulse ox got dusty and I felt peace in knowing that Christopher was going to be okay.
Some people called it denial, some people called it an amazing act of faith - I tend to agree with the latter.
{Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus Philippians 4:6-7}

I trusted God and with that trust came the biggest peace that is very hard to describe. We celebrated Christopher’s birthday weekly and monthly, cake and all. Eventually, his expiration date came and went, he still remained a hospice patient, and we were still taking it one day at a time. His first birthday arrived and I cannot express to you the joy I felt that whole MONTH. The day we were promised NEVER to see was here!!! We had a huge celebration, and continued to give all honor and praise to the Lord. Christopher continued to get older and when he was 15 months old his hospice nurse decided it was time to take a look at his heart (we weren’t allowed any more ECHO's) with Christopher being a hospice patient and they “didn’t want to keep getting our hopes up”. The doctor told us that his heart had slightly improved but that he was still hospice status. Two days later we received a call from him that our visit left him feeling like it wasn’t finished and he took annother look at his ECHO. He also had all of his colleagues review it and Christopher’s heart had improved so much that in his good conscience, he could not recertify him for hospice! Okay after trying to put into words how I felt on his birthday, this is even more difficult to describe. Our language does not have a strong enough word. I can tell you that God does reward trust and faith and Christopher is a living breathing example.
We got another life shaking phone call when Christopher was 21 months old, this time from this geneticist. He told us the reason Christopher was born with his heart condition is because he has
Barth Syndrome(http://www.hopkinsmedicine.org/cmsl/Barth_Summary.html), a very rare genetic debilitating disorder affecting only boys, that causes heart failure, neutropenia, low muscle tone, fatigue, eating issues and pain along with other problems. It is not just his heart that is affected, but every single cell in his body.
There is a big possibility that we will face a decision of heart transplant again, as BTHS causes the heart function to be a rollercoaster. He is not supposed to be around other children because of the neutropenia, he has poor immunity. A fever can be fatal.
Christopher was the very first Barth syndrome child in our state, followed by his first cousin, Jacob. Barth syndrome affects less than 1 in every 400,000 males world wide and there are only approximately 150 known cases worldwide, though it is believed that BTHS is severly underdiagnosed. It is a very scary feeling to hear every doctor who examines your child say they have never heard of Barth syndrome and that I know more than they do about the disease. Barth syndrome did not get a name until the early 90’s and it had a 100% mortality rate for boys under the age of three as late as the 80’s.
With this diagnosis is affirmation to never lose sight of the trust we must have in our Father in heaven. We still depend on miracles every day. Back to the faith thing. God is in control, and He doesn't do half miracles and our trust in Him has never failed us.
　
The lemonade from the lemons of this discovery is that Barth syndrome Foundation (http://www.barthsyndrome.org/english/view.asp?x=1) has been a huge abundance of information and support for us. It is kind of like inheriting a whole new family of people who care about you. We experienced at the BSF 2010 International Scientific, Medical & Family Conference doesn't end with the affected families, even the scientists and doctors truly care. We met other families from all over the world, and some of the “boys” are now grown men, (our heroes!!) and it gives us a lot of hope. At this very gathering I realized this was the first time in Christopher's life that his story was actually ordinary! See, every one of these boys are a true miracle and each have an amazing story.
He is now 2 and a half years old! His last echo revealed that his heart function is up to 79% - with his own heart! He still has obstacles, but man when I look back at how far we have come, I am still awestruck by the power of God's healing.
His 3rd birthday is rapidly approaching and I am basking in every minute with him. Each milestone we reach, we remember how special it is, we were never supposed to see them. I still know better than to take for granted my time with him as we don’t know when god will call us home. It is a true miracle that my Christopher is alive today. Also, doctors have to tell you what they have learned in the text books, but that doesn’t mean God or the child in question is reading that same book.
I don’t know God’s plan, but I know that the least I can do is to continue to honor and praise Him, while also helping to spread CHD and Barth syndrome awareness. Christopher's story has made a number of headlines and he has become a regular little celebrity.I work closely with Mississippi Mended Little Hearts in hope of supporting others who find themselves in the situation we did. We also love to do anything for the Blair E batson hospital for children, after having so many doctors appointments, etc., that the staff have all become like family. The most important message for my family to convey is that God is still in the miracle buisness!
(If you have faith the size of a mustard seed, you will say to this mountain, "move from here to there," and it will move; and nothing will be impossible for you. Matthew 17:20)
I would like to invite you to follow Christopher's story and updates at his caringbridge website, http://www.caringbridge.org/visit/cj08 . If you would like to know the entire story, you can set the journal entries from oldest to newest.
I will "walk by faith, not by sight"
Matthew 6:34


"KEEP SMILING & PRAISE THE LORD ANYHOW"
http://www.caringbridge.org/visit/cj08
Kristiana

Supported Organizations:

CHH Informational Brochure

The following is information placed on a brochure I created to spread the word about Cross Healed Hearts.



Don't worry about anything; instead, pray about everything tell God your needs, and don't forget to thank Him about His answers. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will keep your thoughts and your hearts quiet and at rest as you trust in Christ.
Phil. 4:6-7

Web site:
www.crosshealedhearts.blogspot.com

What?
Cross Healed Hearts is a non-profit, Christ centered ministry that provides prayer, love, and support for Pediatric heart patients and their families. Our purpose is to reveal the amazing, healing power of the cross, one heart at a time. We strive to bring the hope that lies within our Lord, Jesus Christ, to those enduring the pain and fear of congenital heart defects and associated heart issues in children. While our focus seems to be on CHD, we also hope to connect with and support families living with Turner’s Syndrome (with and without associated heart defects) as well as promote awareness about this little known syndrome. At the same time, we plan to reach out to anyone we come across in need of continuous prayer, due to loss, illness, high-risk pregnancy or hardship. We all need our hearts healed at times.

The CHH T-Shirt Fundraiser


How?
We have many high hopes for this ministry, but for now, we are doing the following:
1. CHH appliqué pillows are sent to people (all over the U.S., but especially in our area) in need of love, support, and encouragement, due to loss such as miscarriage, illness, CHD, TS, etc., as a token of our thoughts and prayers for them. The pillows are sent along with information about our blog, and recipients are placed on the CHH prayer list where “prayer warriors” pray for them daily.
2. Hand-sewn, red, heart shaped pillows are donated to Blair Batson hospital for children in the Pediatric Intensive Care Unit recovering from surgery. We call these pillows “cough pillows” because patients hold these to their abdomen when coughing in recovery to make it less painful. Along with the pillows, patients are given Sharpie markers (also donated by CHH), so doctors, nurses, and visitors may sign their pillows as a keepsake of their survival.
3. Tie-knot fleece blankets are also donated to Blair Batson Hospital for infants in the PICU as well as pregnant mothers carrying CHD babies in the hospital. This is just a soft token of our affection to keep them warm while in the cold hospital environment.


Why?
Meet Avery...

Photo Compliments of Mauri Hart Photography
Avery is my one year old daughter who was diagnosed with fetal cystic hygroma at 18 weeks gestation. We were told she would not live past 22 weeks in-utero, but instead of circumstances worsening, Avery progressively got better. Many prayers were answered on her behalf, and we believe she was and is still being healed by the hand of God primarily due to prayer. Although Avery had only around 1% survival according to statistics, she overcame the odds, and was born into this world in June of 2009. Avery has Turner’s Syndrome, along with associated heart and kidney defects. She has been through various procedures since birth, as well as 2 heart surgeries (one at one week old and one at 7 months old), but she is hitting all of her milestones and thriving. While she will have surgeries and other procedures throughout her life, she is expected to live a normal, healthy life. I want others to feel the comfort in Christ that I was able to feel as a mom in these circumstances by giving support, love and prayer to those that are suffering. Not only that, but through the blog, people are able to be connected by circumstance, find out valuable information and resources, as well as read stories of others who have overcome life’s difficulties. CHH portrays a positive message and can give hope to those facing dire circumstances.

CHH Supporters

Linda Turner

Judy Simmons

Laura Beauman

Willingham’s Gift Shop
1305 Washington St.
Vicksburg, Mississippi
(601) 631-0081

Fabs & More
1106 Washington Street
Vicksburg, MS, 39180
601-636-0510
http://www.fabsandmore.com

Avery Photo by Mauri Hart Photography
www.maurihart.smugmug.com




To learn more about our story, CHH, CHD, TS, and the like, or to contact us, please visit crosshealedhearts.blogspot.com or “like” us on Facebook!
God Bless you for your support of this ministry!
Megan Beauman Bell

Baby Pierce Article, Jackson Free Press

The following article was posted this week in the Jackson Free Press about the Helms family and their CHD angel, Pierce. Pierce's father, BJ, said, "I know he's in heaven. He's whole again, not hurting. That's how I get peace with it. Every day I miss him, and I'll always miss him."
The kind of peace we crave through times like these, only God can give. Sometimes prayers aren't answered the way we hoped they would be. Thankfully, we have a God who clings to us, when we aren't strong enough to hold on to him. God's plan is so far above our human comprehension, we could never understand, even if he tried to explain it to us. Through this pain, the Helms' family is touching lives and spreading awareness which will in turn save lives. During my pregnancy, I read the following quote from Rick Warren: "Your greatest ministry, will likely come out of your greatest hurt." I believe that to be very true. Through our painful experiences, we are able to relate to others and also comfort them in similar situations. I counted on the following verses to lift me up lots of times during my pregnancy, expecially, when I thought Avery would was going to Heaven rather than staying here with me.

2 Cor. 1:3-7

All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. We have plenty of hard times that come from following the Messiah, but no more so than the good times of his healing comfort—we get a full measure of that, too.
When we suffer for Jesus, it works out for your healing and salvation. If we are treated well, given a helping hand and encouraging word, that also works to your benefit, spurring you on, face forward, unflinching. Your hard times are also our hard times. When we see that you're just as willing to endure the hard times as to enjoy the good times, we know you're going to make it, no doubt about it.

2 Cor. 4:8-18

We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies.
Yes, we live under constant danger of death because we serve Jesus, so that the life of Jesus will be evident in our dying bodies. So we live in the face of death, but this has resulted in eternal life for you.

But we continue to preach because we have the same kind of faith the psalmist had when he said, “I believed in God, so I spoke.”We know that God, who raised the Lord Jesus, will also raise us with Jesus and present us to himself together with you. All of this is for your benefit. And as God’s grace reaches more and more people, there will be great thanksgiving, and God will receive more and more glory.

That is why we never give up. Though our bodies are dying, our spirits are being renewed every day.For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.

Regardless, of what happens, God will lead us through it, and if we let Him, He will create a purpose within us that we never would have pictured for our lives. Steven Curtis Chapman's wife made a great point (which I heard on KLove) when she said that when we can praise God through the most terrible times in our lives, as well as the wonderful times, we know our love for Him is pure. Praise Him in whatever storm you are in, and know that He loves you and He has an ultimate plan that is much bigger than we are.



Please join us all in the heart walk to raise awareness and walk in honor of all of the CHD "babies" out there.

Walking for Pierce
by ShaWanda Jacome
September 29, 2010


Pierce lay motionless in her arms, with his little Mohawk hair, dark brown and full. "I got to see his face," says Leah Helms, 33, about what she remembers most vividly in the final moments of her son's life. "I'm glad that we got to have that moment. ... (My husband, BJ, and I) were both just speechless ... how pretty to see his nose and mouth and face."

Pierce Allen Helms, or Baby Pierce as he had become known, had been running on fumes those last couple of days.

"He never gave up, he fought to the end. He never quit," BJ, 35, said.

Pierce's lungs, damaged and full of holes from the ventilator, couldn't be repaired through surgery. And because of sepsis, a whole-body infection, he didn't qualify for a double transplant.

Baby Pierce was born with congenital aortic stenosis, an abnormal narrowing of his aortic valve. Infant (younger than 1 year) death rates are 36.5 per 100,000 white infants and 52.5 per 100,000 black infants, the American Heart Association reports.

Although a large part of the AHA efforts concentrates on adults, it also funds research to find ways to detect congenital heart defects sooner and give children a longer and better quality of life, Elaina Jackson of the AHA of Jackson said.

Dr. Jorge Salazar, chief of congenital heart surgery at the University of Mississippi Health Care, performed the state's first arterial switch on an infant in August.

Since joining UMMC in April, Salazar, 42, has performed 55 successful heart surgeries on children. "I'm really excited for the other kids in Mississippi because they don't have to leave their state anymore. They get the same high-quality care at home," Salazar told the JFP in September.

Prior to Pierce's birth on Oct. 26, 2009, the Helms family had no indication of what lay ahead. Leah had a smooth pregnancy and four prior births of healthy babies.

"We never knew anything was wrong. ... I was thinking everything was fine," Leah said.

Things changed, though, after she delivered. "The nurse said ... 'We think he has a murmur. When he's breathing there's just this little growling sound,'" Leah said.

Pierce was transferred from River Oaks to UMC for surgery, but went into congestive heart failure and respiratory failure. He was then airlifted to the Children's National Medical Center in Washington, D.C., for additional surgery on his heart.

"We were just in shock. You hear about this kind of stuff, you read about it, but you just don't think it's going to happen to you," BJ said.

Over the next two months, Pierce's condition worsened, and it became evident that he would need a new heart. Pierce was transferred again to Arkansas Children's Hospital in Little Rock, arriving New Years Day.

"Just the agony of waiting and wondering and not knowing--it's a miserable, miserable feeling," BJ said.

"It was a long journey," he continued. "... I've been to combat ... I mean I wasn't just over in a country typing papers. I was (on the) front line, kicking in doors. And that doesn't compare to the stress of having a child on a transplant list, being that critical."

Baby Pierce had been through so much--pulmonary hypertension, premature ventricular contraction (misfiring of the heart), infections, ventilators, blood clots, transfusions and heavy sedation--his body just couldn't handle the constant strain. On Jan. 15, Leah broke the news on her online journal.

"My little Pierce got his angel wings today around 3."

Through teary eyes, BJ said, "I know he's in heaven. He's whole again, not hurting. That's how I get peace with it. Every day I miss him, and I'll always miss him."

BJ and Leah live in Brandon with their children Katie, 13; Peyton, 6; and Patrick 2. They lost their son Jonathan, who would have been 9 this year, in a 2003 car accident.

The Helmses don't want other Mississippians to go through what they did; they want to bring awareness. And although they wonder if the outcome would have been different if a pediatric cardio unit had been in Mississippi for Pierce, they are glad it's here now.

"I think there was more of a lesson than just to have Pierce and lose him. ... God does everything for a reason. We might not understand it at the time, but you have to listen to him and keep on going." Leah said.

This year, the JFP will walk in memory of Baby Pierce. Last year, more than 3,000 people raised more than $300,000 to fund heart research and educational programs.

The American Heart Association's 2010 Metro Jackson Start! Heart Walk is Sunday, Oct. 10, at 2 p.m. with registration at 1 p.m. The free event features a kid's zone, music, health information, a one-mile route for heart disease and stroke survivors, and a free, heart-healthy lunch by Subway. Pets on leashes are welcome.

http://www.jacksonfreepress.com/index.php/site/comments/walking_for_pierce_092810/

Sign up at metrojacksonheartwalk.
kintera.org/teamjfp to join team JFP. For more information, contact ShaWanda Jacome at shawanda@jacksonfreepress.com, or call 601-362-6121 ext. 16

Jeremy Camp Devotional - "Healing Hand of God"

Healing Begins by Tenth Avenue North (with lyrics)

Barth Syndrome

The following information was taken from http://www.ninds.nih.gov/disorders/barth/barth.htm

What is Barth Syndrome?
Barth syndrome (BTHS) is a rare, genetic disorder of lipid metabolism that primarily affects males. It is caused by a mutation in the tafazzin gene (TAZ, also called G4.5) which leads to decreased production of an enzyme required to produce cardiolipin. Cardiolipin is an essential lipid that is important in energy metabolism. BTHS, which affects multiple body systems, is considered serious. Its main characteristics often include combinations in varying degrees of cardiomyopathy (a disorder of the heart muscle leading to a poorly functioning heart), neutropenia (a reduction in the number of white blood cells which may lead to an increased risk for bacterial infections), hypotonia (reduced muscle tone), muscle weakness, undeveloped skeletal muscles, delayed growth, lack of stamina, varying degrees of physical disability, and methylglutaconic aciduria (an increase in an organic acid that results in abnormal mitochondria function). Although some with BTHS may have all of these characteristics, others may have only one or two, and, thus, are often misdiagnosed. BTHS is an X-linked genetic condition passed from mother to son through the X chromosome. A mother who is a carrier of BTHS shows no signs or symptoms of the disorder herself. On average, 50 percent of children born to a carrier mother will inherit the defective gene, but only boys will develop symptoms. All daughters born to an affected male will be carriers.

Is there any treatment?

There is no specific treatment for Barth syndrome. Bacterial infections caused by neutropenia can be effectively treated with antibiotics. The drug granulocyte colony stimulating factor, or GCSF, can stimulate white cell production by the bone marrow and help combat infection. Medicines may be prescribed to control heart problems. The dietary supplement carnitine has aided some children with Barth syndrome but in others it has caused increasing muscle weakness and even precipitated heart failure. Only careful dietary monitoring directed by a physician or nutritionist familiar with the disorder can ensure proper caloric and nutritional intake.

What is the prognosis?

Early and accurate diagnosis is key to prolonged survival for boys born with Barth syndrome. Severe infections and cardiac failure are common causes of death in affected children.

What research is being done?

The NINDS supports research on genetic disorders such as Barth syndrome, including basic research on mitochondrial dysfunction and investigations of other inborn errors of metabolism. The 1996 discovery of the Barth gene is helping scientists and physicians better understand the metabolic and biochemical abnormalities seen in the disease and learn how genes cause heart disease, muscle weakness, and other problems in the body. The ultimate goal of this research is to find ways to prevent, treat, and cure these disorders.



To support Barth Syndrome awareness by purchasing this beautiful necklace, please visit the following link on etsy.com
http://www.etsy.com/listing/54285614/barth-syndrome-necklace

To donate or find out more information, please visit...
http://www.barthsyndrome.org/english/view.asp?x=1

About Jenny

Through a mutual Facebook friend, I recently came in contact with Jenny Wakenell. She is a college graduate student with Turner's Syndrome. As you will read, TS doesn't hold Jenny back, she is an awesome example of what hard work and determination can do. Thank you to Mrs. Wakenell and Jenny for sharing with CHH! Jenny Wakenell is really doing something to make a difference!!






Due to Jenny's very busy schedule in school, her kind mom, Maureen, sent me this part of her story....
Jenny just started graduate school at the University of Michigan. Jenny wants to get a master’s degree in social work, is carrying a full schedule of classes and began an internship this semester. Jenny wasn’t diagnosed with Turner Syndrome until she was almost fourteen years old and just entering high-school. We were sent to a specialist (pediatric endocrinologist) because she was so very short (4’5”) at the time. We just thought it might be a question of more vitamins or something since we did have a number of short relatives. We were shocked to learn it was due to Turner Syndrome, a condition we never heard of. Jenny was immediately put on high doses of human growth hormone and gained seven inches in three years. Since her diagnosis in 2002, my husband, Jenny and I have made it our mission to learn all that we can about TS as well as NLD (Nonverbal Learning Disabilities) which can also be a result of Turner Syndrome. NLD can affect girls with TS in varying degrees. NLD may cause problems with motor skills, visual/spatial/organizational misperceptions and/or social difficulties. Therefore, early identification is extremely important. Fortunately, Jenny has always been an “honor student” both in her Catholic elementary and high schools. In college, she won several scholarships and awards, completed two honors programs and graduated with “high distinction.” Jenny does have some Nonverbal Learning Disabilities though, but through hard work, dedication and determination, she has done extremely well academically. (She’s usually doing homework until the “wee hours” of the morning.) Since 2002, we have attended all the national Turner Syndrome Society annual conferences. This organization (based in Houston) can provide a lot of great information. In fact, Jenny is a volunteer on their e-board to answer inquiries and offer personal insights to people around the country. We have also been to a TS conference in Canada, and Jenny has been to several specialized camps for girls with TS. Jenny has also participated in a number of medical research studies, such as Dr. Allan Reiss’ neurological one at Stanford University, Dr. Carolyn Bondy’s TS biological profile at the National Institute of Health and Dr. Michael Silberbach’s “Healthy Heart Study,” among others. Even though we didn’t know Jenny had TS when she was growing up, we now have a much better understanding of why certain things happened when she was younger (such as her trouble learning to ride a two-wheel bike - a “balance” issue most probably connected with NLD, she eventually was able to master her bicycle, but it did take much longer than her two older brothers). Anyway, Jenny has developed an awareness campaign for TS/NLD. In addition to giving speeches and seminars, she has created a travelling self-teaching exhibit, “The Turner Town Project.” This interactive display is a collection of dollhouses with storyboards in front of each building depicting some of the everyday challenges of a girl with TS/NLD from birth through her later teen-age years. Medical posters, a reference/lending library, comparison growth charts, resource guides, “real-life” photos, etc. also accompany the project. If you would like to read more about “Turner Town,” there are some pictures on http://www.dosomething.org/project/turning-wheels-turner-syndrome-and-nonverbal-learning-disabilities-awareness-campaign.

This section was written by Jenny on her dosomething.org project page...
Just before entering high school, I was shocked to be diagnosed with Turner Syndrome (and Nonverbal Learning Disabilities) by a pediatric endocrinologist. My regular family physician had not previously treated anyone with Turner Syndrome. Since I never heard of these conditions before, I became worried and did not know what health impairments might occur from this disorder. I decided to learn all that I could about TS and NLD. My life suddenly took a new direction as I became immersed in research, awareness, and advocacy. It was important to meet experts, make contacts, reach out to others, and examine my own feelings about disabilities. I’ve attended medical camps and national conferences around the US and Canada and talked with specialists and authors. I have traveled to Stanford University, the National Institute of Health and other places to participate in vital research studies. It is my sincere hope that my involvement in these studies will lead to better recognition, identification and treatment for anyone afflicted with TS or NLD. I am a volunteer with the Turner Syndrome Society for email/phone inquiries and interviews. (Sometimes, students are seeking a first-hand account for school reports, but other callers are looking for advice or reassurance.) I have also helped out with the younger girls at the national conferences – mentoring is especially gratifying to me. Little is known about TS and NLD among the general public, teachers, and even many doctors, so I created a multi-media awareness campaign as an individual initiative for a Girl Scout Gold Award. I did not want others to experience the negative feelings of uncertainty and anguish that I experienced. I designed workshops and seminars and have given speaking presentations to both adult and youth audiences about these medical issues. I constructed a self-teaching traveling exhibit, “Turner Town,” a collection of dollhouses with storyboards about some of the troubles and triumphs of a girl with TS and NLD. In the stories, the community rallies around her and supports her through the obstacles she encounters. With proceeds from private fundraisers and my own personal funds, I established a specialized library of books about TS and NLD. Medical posters, photo collages, a resource guidebook, growth charts, tot lot block set and children’s activities are included to provide more detailed information. Currently, I’m raising money to purchase a trailer to bring the exhibit to the TSSUS Conference in Indianapolis this July.


Please check out Jenny's efforts and learn more about TS at : http://www.dosomething.org/project/turning-wheels-turner-syndrome-and-nonverbal-learning-disabilities-awareness-campaign

Great news!

http://www.businesswire.com/news/home/20100921007164/en/Newborn-Coalition-Applauds-Federal-Advisory-Committee-Recommendation

See this link for exciting news on screening for Critical Cyanotic Congenital Heart Disease to the core panel for universal screening of all newborns in the United States.

CHH T-Shirt Fundaiser Payment

I will begin posting who I've received money from for t-shirt orders, so no one worried that it didn't make it through the mail! I know I will never remember to contact each individual person as I receive checks, so this will hopefully be an easier way. Thanks so much to everyone who is helping with this project! God Bless! M

Leigh Ann P., Erin H., Tish M., Faye B., Cindy B., Andrea W., Misty N., Carol P., Leah H., Krista R., Jenny K., Lisa S., Renee W., Krystal W., Shirley, Laura C., Megan F., Laura B., Melinda P., Ann E.,


I'll continue to update this list as I receive payment. Thanks Again!!

For when I am weak, then I am strong.

Three times I pleaded with the Lord to take it (my affliction) away from me. But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
2 Corinthians 12:8-10

Caroline's Story

The following story was given to me by Katie Ard Puckett who lives here in the Jackson area. I actually met Katie's mother, Mrs. Ard, when I returned to work after my Avery was born and had heart surgery. She shared pictures of Caroline with me, and basically told me that through all the hardship, there is much joy and happiness. I appreciated that so much, and hope others can see that through this story as well. I was so glad Katie agreed to share their story with us, and pray that God will continue to bless and heal sweet little Caroline. Thanks Katie and Family!


Caroline, 5 Days Old, after her 1st Open Heart Surgery

Caroline, today


Emily Caroline Puckett was born on Thursday, July 10, 2008. She was born with a serious heart defect called Hypoplastic Left Heart Syndrome (HLHS). This basically means that the left side of her heart is severely underdeveloped or nonexistent. To correct this, she must undergo a 3-stage surgical process. She had her first surgery (Norwood) on July 15, 2008, at Children's Hospital of Philadelphia (CHOP). After being in Philadelphia for a month, they let us come home. Caroline had many obstacles in those few months at home. After Caroline’s first round of immunizations she had seizures and had to be hospitalized at Blair E. Batson Children’s Hospital in Jackson for one week. In October 2008, Caroline went for a routine cardiology appointment and her oxygen readings were very low. Her cardiologist, Dr. Jennifer Shores, decided to keep Caroline overnight and schedule a heart catherization for the next day. The next morning, Caroline went in for a heart cath and they found that the shunt in her heart was clotted almost completely. The Dr. did not feel comfortable fixing the problem here, and therefore wanted us to go back to CHOP for the procedure.

When Caroline came back from her heart cath they brought her to me and put her in my arms while telling me that we were going to have to go immediately back to CHOP to have this fixed. Everything after that moment was a blur for me, but the nurses came in and took her from me to put her in the ICU setting to keep a better watch on her while we were going home and gathering our things. Within minutes of them taking Caroline from my arms she crashed and they told me to kiss her and tell her I loved her and walk away so that they could do all they could to help my baby. I can’t begin to tell you what that felt like. I was so powerless and my baby was slipping away from me as I watched. Caroline was emergently intubated and kept comfortable until they could arrange for an air jet to come pick us up. We arrived in Philadelphia in the middle of the night and they worked on her for hours to stabilize her for another cath the next morning. She was able to have the catherization and her shunt was stinted so that blood could move freely. The surgeon came to me that day and told me that 10% of these babies die suddenly at home between the first and second stage surgeries because of this very reason. If we had not had a Dr. appointment and been in the hospital when this happened, we would not have our little girl today. Caroline’s vocal cords were damaged during the emergency intubation and because of this, we had to thicken her formula to a nectar consistency to prevent aspiration. Shortly after we returned home from Philadelphia Caroline stopped eating by mouth because of the strain it was putting on her heart. We spent another 10 days at Blair Batson trying to work out feeding issues and learning how to deal with an NG tube for feeding that ran up her nose and down her throat. Caroline’s 2nd stage surgery was scheduled for December 5, 2008 and she had a scheduled pre-surgery heart cath planned for December 1st. We were very fortunate to have Sanderson Farms provide us with a flight to PA for our 2nd surgery. They told us that they would arrange for us to be taken if we could leave Nov. 25th. We spent Thanksgiving holidays at the Ronald McDonald House in Philadelphia and took Caroline to the hospital that Friday to be weened off of blood thinners. The heart cath that Caroline had on Dec. 1st showed that her aorta had narrowed and needed to be ballooned and reopened for optimal blood flow. Because of the procedure done during the heart cath, Caroline’s surgery would have to be postponed at least 4 weeks. The doctors did not want us flying back and forth between Philadelphia and Mississippi and decided that it would be best to keep Caroline in the hospital until surgery. Caroline had her 2nd stage (Glenn) surgery on December 22, 2008. After surgery Caroline did really well and was extubated very quickly and taken off a lot of the post-surgery meds. On December 23rd, in the middle of the night, I received a phone call saying that she coded and had to be re-intubated. That day was a very hard day for us because they kept her almost in a paralytic state the entire day and night. Christmas eve was a much better day and she started to slowly come around. By Christmas morning, they extubated Caroline and she was awake and aware enough to “open” her presents that had been provided by the hospital and to take a picture with Santa Claus. The next 2 weeks were spent being taken off medicines and working with physical and occupational therapy to start getting geared towards going home. Caroline never picked back up eating and the doctors at CHOP thought that it would be in her best interest to have a surgical procedure to insert a G-tube into her stomach for feeding. Finally, on January 22, 2009 they let us go home. After spending Thanksgiving, Christmas and New Years in Philadelphia, news of going home was music to our ears.
Caroline has been doing very good since January and has been living a VERY happy life. She goes to the cardiologist , now, only once every 3 months. She had to have a heart cath in May 2009 to balloon her aorta again and everything went really well. Caroline has one planned surgery left to go, and will be traveling back to Philadelphia in the spring. We could not have made it this far without the outpouring of love and support that we have received along the way. It has been a very long and hard journey that is not anywhere close to being over, but we are so very fortunate to have her. We hope to bring more awareness to the growing number of children born with congenital heart defects.
Sincerely,

Adam, Katie and Caroline Puckett

“1 in 100 babies is born with a congenital heart defect. WHAT IF THAT ONE WAS YOURS?”

Working on Blog!

If you happen to check out the blog while I am working on it, I apologize....I am trying to change things up a bit this weekend. Thanks for your patience!