Below is our story of Turner Syndrome, congenital heart defects, and God's healing. I began writing this upon finding out about my daughter's circumstances during my pregnancy.My hope is that it provides hope to others facing both Turner Syndrome and congenital heart defects. ♥
Avery Elizabeth Bell
June 9, 2009
Turner Syndrome: aortic coarctation, aortic stenosis, monocuspid aortic valve, multicystic kidney
Avery’s Story
Part One:
I can remember the moment I found out I was
pregnant so clearly. I was so in shock, and thought, “Is this really happening?
Is God answering me?” Once it settled in, I would just catch myself smiling for
no reason, thinking of the day she would be here, and I could hold her and kiss
her little face. I was beginning a new journey, and I had no idea what was in
store for us. Even more vividly, I remember the day we found out the news. We
were waiting in the waiting room with my mom and dad, talking to another girl
who was pregnant with her 2nd child. She would go before me into the sonogram
room. I remember when she came out, she said “it’s another girl.” She was a
little disappointed because she was hoping for a boy this time. My only real
fear going into that room was that the baby wouldn’t be positioned correctly,
and they wouldn’t be able to determine the sex. After all, I had taken off work
the entire day, and was excited to do some pink or blue shopping. Looking back
on the moments as I watched her, while lying on the table, I can see now that
something wasn’t right, and we just didn’t notice at the time.
Jake was videotaping, and I was in awe of my precious little one moving around
in my belly as she sucked her thumb. What could be wrong with that? When the
doctor came in unexpectedly, I still didn’t let myself think anything could be
wrong, until she sat down to tell us she had some concerns. I suddenly felt
like the earth had moved from under my feet, and I was falling into a
bottomless pit. Cystic Hygroma? May not survive? Specialist? I just saw her
moving around fancy free! The worst part of all, was that mom and dad had to
see us get the news. Mom was having lots of issues with work, and dad had
recently lost his mother to Alzheimer’s. Poor Jake, how would this affect him?
The look on his face, not knowing what to do or say, just makes my stomach turn
thinking about it. I immediately tried to blame myself, thinking I was being
punished for some mistake I’d made in my life. I’d made so many after all. Once
the tears came they wouldn’t stop, and I just couldn’t get it all to sink in.
We came home, and Jake took the day off. He held me, and we prayed together. I
told God that I knew all things were possible through him, and asked him to
please save my little one. I realized that Jesus wouldn’t have died on the
cross and taken punishment for my sins, if I was going to be punished by God
any way. It was pretty ludicrous for me to think that once I came back to
reality.
The doctor warned me not to look on the Internet, and I wish I would’ve
listened. All I could read was it would end in death, and how most terminate
pregnancy shortly after finding out. I went through so many feelings: fear,
sadness, worry, numbness, anger…nothing anyone said to me made me feel any
better. On the way to my appointment with the specialist the next day, I heard
By Your Side by Tenth Avenue North on the radio. I knew it was no accident that
I heard that particular song in that particular moment. God was telling me He
loved me, and that I had to give this to Him. I felt a bit stronger walking
into the office. I then got some hope from the doctor , and had my amnio done.
He said that the unexplainable happens, and that sometimes these things just
went away. Knowing that the growth was a large septated one, and that there was
little to hold on to alongside the issues they were seeing with her right
kidney, echogenic bowel, and the unknown status of her heart chambers, I still
hoped things would be ok. I actually read that with all of her problems added
together, her survival was around 1%. I held on to that hope, and used the time
to draw closer to God. I even wrote her a little story to read when she got
here about how God healed her when she was in mommy’s tummy. The waiting was
the worst part. From one appointment to the next all I could do is wonder If
we’d hear a heartbeat, or not. Work helped me to keep busy, but the tears
always came when I got to my car at the end of the day. As time went on, I
would get better, but then the appointment day would arrive along with the
sadness and anxiety.
We went to see my OB to listen for the heartbeat, and get our amnio results on
a Tuesday. I was relieved to hear it beating at the normal rate. I couldn’t be
relieved for long though because the news from the amnio was disheartening. We
were told that our little girl had Turner’s Syndrome, and that with the size of
the hygroma along with the other defects and problems, she would most likely
develop Infant Fetal Hydrops and die by the time I was 24 weeks. It was
definitely tough news to swallow. Is God giving me this information that I may
begin coping with her death, or is He telling me to expect the impossible and
have more faith in Him? I knew that God was capable of far more than I had seen
before, but was unsure of His plans. I tried to be strong, but it hurt. I was
saddened every time I’d see a pregnant woman or small child. It seems like
every show I watched on T.V. was about a sick child or a person having a baby.
It made it even worse to think about kids I knew who had parents who didn’t
care for them, or to think of people who got pregnant when they didn’t even
want the child they were carrying. I admit, I felt sorry for myself some. I
also questioned why God would answer my fervent prayers for a child, and then
the child would be taken from me in this way. I started to think about all the
people out there that were praying for us, and I was so grateful for it, but I
just didn’t know what to do or how to feel. The more I thought though, I realized
a few things. First of all, more people than I even knew about were praying for
us, and prayer is a powerful thing. God loved me, and he hurts for me just like
my earthly dad does. He had my best interest in mind, and knew more than I could ever imagine. I decided then,
that there is a reason for this to happen, and I might never know the answer to
why?. I also read this book the preacher had given Jake about losing a child.
It put so many things in perspective. I was comforted by knowing my baby would
have instant Heaven when she died. She’d never have to feel sadness or commit a
sin. God could have been saving her from a life of pain and discomfort. Most
importantly, I read that when I got to Heaven, she’d know me. I’d always known
I wanted to go to Heaven, but it made me actually long for it, the way the
songs I sang in church always said. What better place for her to be if she
can’t be with me? She’d be safe in the arms of God, the only one who loved her
more than Jake and I did.
We went in again to see the specialist not really knowing what to expect (as
usual). To our surprise, they told us her Hygroma had gotten significantly
smaller. Not only had it gotten smaller, but she was the exact size she should
be for the length of the pregnancy, her heart looked good, and even her brain
had the correct measurements. One of her kidneys wasn’t functioning, but the
other was doing a great job, so it wasn’t a concern. I could tell the doctor
and technician were surprised themselves. Immediately, I just thanked God for
what he was doing with my little girl. It took a little bit to believe what
they were telling me, and I continued to feel like I was on some sort of weird
roller coaster ride. I could tell Jake felt like a load had been lifted. I
began to feel that way too, and we decided to take things one appointment at a
time, and to be cautiously optimistic. After all, our doctor sure seemed to
feel that way. I set up an appointment with the Cardiologist to make sure her
heart was doing well, and began to have the mindset that Avery would be here in
June. As I waited on the Cardiologist appointment, I began to think back about
things. Prayers I’d prayed, and things I’d asked for. I remember that on
several occasions, I’d asked God to draw me closer to Him, and for Him to show
me how to listen to Him. I was always so unsure about what God wanted from me.
I wanted to be able to know when He was telling me to do something, rather than
me telling myself to do something. I had a feeling a while back that God had
more in store for my life, than what I was doing at that moment. I just wanted
to make sure I knew when the time came, that it was time for me to do what God
instructed. When I thought about all of those things, I thought, “maybe this is
it, maybe He is drawing me closer to Him through this child.” I began to depend
on Him, because I was so hopeless depending on myself. I thought I had given
things to Him before, but I would always keep a small hold, thinking I could do
some things on my own. I knew, that I could do nothing on my own, that I have
to rely on God for everything. He’s the One in control, not me, or Jake, or the
doctors, or the Hygroma and Turner’s. I began to see what it really feels like
to let Him have all my worries like He had always said to in the Bible. He took
my yoke, and gave me rest.
Mom and dad came to Brookhaven with me, because Jake was in Texas with
baseball. The cardiologist was very humorous, but I could tell he knew what he
was doing. Avery seemed to be difficult with her positions, as usual, but he
finally saw all he needed to see. Things looked good, and her heart was normal
so far. I’d have to continue to see him throughout my pregnancy to ensure
nothing developed, but what else could I ask for at this moment? She was
growing and healing! I set my mind on getting things ready for her, and began
buying clothes and thinking about the nursery. People began to tell me I had a
glow, and I was feeling good. I was trusting God to heal her, and hoped my
testimony would be one to show others how great our God is, and just what He
can do in a life that trusts Him. As my next sonogram appointment neared, I was
anxious to see what was happening with Avery. I went in, and the hygroma was
almost completely GONE….so much so that they wouldn’t have even told me about
it if it were my first sonogram. Not only was the hygroma better, but even her
right kidney looked better. They couldn’t even tell there was a kidney before,
but now the cortex was visible! My doctor said he’d seen much worse kidneys be
perfectly normal by delivery. She was a little over one pound, and hadn’t
skipped a beat with all that was going on! My little one was 1%, yes, 1% of
babies with her condition who was likely to survive. Could I really begin to
start enjoying this pregnancy without out all the mental stress???
That is exactly what I began to do. I began to feel normal again, and was
excited about the arrival of this amazing little girl God so graciously was
healing. In the back of my mind I wondered about the Turner’s, and how it would
affect her, but I learned to put those worries to rest for the most part. God
had done so much already, and the last thing I wanted to do was worry when He
was telling me not to. I did print out information, and saved websites to check
into later. I knew the basics, and the rest was up in the air. All of these
children are different, and I’d just have to wait and see the characteristics
Avery would have. Jake painted the nursery and put her bed together, and I
began to decorate. I hung her little clothes in her closet, and bought a few
toys to place in her room. I couldn’t wait for my baby showers which were
quickly approaching! Time was definitely ticking down!!!
Part Two:
Avery Elizabeth Bell was born on June 9, 2009 at
4 lbs and 15 oz and 17 ¼ in. I remember them saying here she comes, and I heard
that cry- which made me cry. Then, I saw her, and it was the more surreal
moment I’d ever experienced. I was so relieved, and just thought that
everything was fine. I was pretty jealous because Jake got to hold her, and was
able to take everyone back to the nursery to see Avery. I had to wait in my
room and ‘recover.’ Other than that, things were going great until the phone
rang. The doctors discovered she did have the coarctation, and told us Avery
was being transported to UMC as soon as possible. Not only had I only seen her
for a brief moment while under anesthesia, now they were taking my baby away,
and I was stuck in a different hospital. I did get to see her before she left
in the nursery, and was able to hold her for the first time in the nursery. The
transport woman brought Avery by my room in an incubator so I could say good
bye and sign the needed paperwork. It was all so devastating. Jake and Faye
went to stay with her in NICU. . After a near mental breakdown, I prayed with
all my heart to be moved to UMC (which didn’t look like it was going to
happen), and shortly after I was told to pack my things. That was probably the
quickest answer to a prayer I’d ever had! Once
I was at UMC, I was able to visit Avery in NICU whenever I chose, and we also
had a place to sleep because I had a room. It was difficult seeing this tiny
baby attached to cords and monitors, but she did look peaceful and rested most
of the time. The nurses were very kind and caring, and they would let me hold
her at night sometimes. NICU was a little overwhelming with upwards of 90
infants. Avery was in the front though, so we didn’t have to see much of what
went on with the others. We spent a lot of time with her there, and put our
parents on shifts so she wouldn’t be alone. It was very obvious how strong she
was- she was a fighter. We waited and waited to find out about the heart
surgery, and were told she might be airlifted to Washington D.C. I looked up
the surgeon, and found he was world-renowned with accomplishments a mile long.
It was very significant how things were timed.
Holding Avery in the NICU
Dr. Jonas, the surgeon, only comes to UMC once a month for a few days. It just
so happened that he was flying in only a few days after Avery’s birth. They
scheduled her surgery to take place on a Tuesday- Avery was one week old. The
assisting surgeon came to explain the details of the surgery, and had us sign
the consent. We knew the basics of the procedure before Avery was even born
because Dr. Braden had explained it all to us. The extreme details were the
things we could have gone without knowing. The thought of such a tiny baby
having heart surgery is much more frightening when it’s a reality. We were also
able to meet with Dr. Jonas, and I felt certain that he was the right man for
the job. He told us she had a 90-95 % survival due to the circumstances. That
sounds awfully good, but as a mother, you worry about the other 5-10%. Once I
prayed and thought more about it, I realized that it didn’t matter what the
statistics were, Avery had only a 1% chance to even survive the pregnancy.
After beating out the 1%, 90-95% would be a breeze. I felt like God put
everything in place with the surgery to let me know she was going to be ok. I
did have those moments of weakness and extreme fear, but He helped me through
it. When the day came for her surgery, they put Avery in the incubator and said
I could talk to her and give her a kiss. When I looked down at her, she opened
her eyes and looked at me…then she smiled. We had been trying to get her to
open her eyes the entire time she was in NICU, and she finally did it. I think
that was just another way God spoke to me to tell me He was in control. When
Dr. Jonas walked in the waiting room, I felt relieved- he was smiling. He said
the surgery went well, and said she was doing great. Even though I was
relieved, it didn’t last long.
Avery in the PICU post-surgery
Once we got to the PICU, it was even more difficult. My precious baby had
something attached to every part of her little body. She was very swollen from
the respirator, and I was scared to touch her that I may mess something up. To
make matters worse, the PICU is open to other beds. There were 2 other older
children who had just come out of heart surgery as well. All we could do was sit
and look at Avery, and strain as we listened to the cries of pain from the
others around us. It was mentally and physically exhausting. We ‘rested’ in the
waiting room with many other people, and sat next to her bed the rest of the
time. All I could focus on was getting all those attachments off of my poor
baby. They gave her meds for pain to keep her from hurting and from being fully
awake. Once she came off of the anesthesia, I could tell she was totally
uncomfortable. All we could do was rub her little head and hold her little
hands to comfort her. Dr. Jonas had told us a few things that would probably
happen to her, and he was right on. I would have been a lot more afraid if he
hadn’t filled us in. After several days (which seemed like a lifetime) the respirator
and cords came off one by one. I was so glad when they finally moved us into
the transition room because she was doing so well. The transition room allowed
us to have more privacy, and we didn’t have to see all of the other sick
children any more. The down side is we were still getting no rest due to
feedings, nurses, beeping monitors, and the one cot we had to share. I stayed
hiding away in that little room with her, and tried to forget where we actually
were for a bit. Avery began to look more and more like a normal newborn. I held
her a lot trying to make up for lost time, and enjoyed every minute of it. We
focused on getting her to gain weight so we could get her home. When the
doctors decided she was ready, they told us we could take her home as long as
she maintained her weight. She did, and we were able to leave the hospital on a
Thursday.
Avery on her way home!
Avery was 2 ½ weeks old. I was so scared the day we left because I felt like I
was getting the flu. I had the chills and ached all over. I wouldn’t tell the
nurses because I was scared they wouldn’t let us leave. I guess I was just
hitting rock bottom. Once we got home, I passed out in the recliner holding
Avery, and we slept for hours. I was just exhausted and coming down from my
adrenaline rush.
Part Three:
Besides the monthly cardiology appointments,
everything just began to seem normal. Avery was growing and hitting milestones.
I enjoyed watching her change and develop so much- she was just such a sweet
baby girl. Dressing her, of course, was also a lot of fun! I went back to work
in August, rather than taking extra time off. I feared I would need my sick
days if Avery had to have any procedures done. The first week of school,
however, I had to take off so Avery could go in for a heart catheterization.
Dr. Ebeid inserted two balloons in her heart- one in the same coarctation area,
and the other in her aortic valve. This was the first instance we’d had with
her valve. We knew from birth that it was a bicuspid valve, rather than a
tricuspid valve, which is a normal Turner’s Syndrome attribute. We hadn’t had
any problems with it before though. Now, there was narrowing and a significant
leak there. It was worrisome, but Avery was in good hands with her doctors, and
she still looked perfectly fine. It was so hard to believe when they’d tell us
something wasn’t right with Avery, because she never shows the symptoms of what
she is going through with her heart.
The catheterization went well, and we went about our lives for a while longer.
A couple months later, Avery’s cardiology appointment showed a bad
echocardiogram. Dr. Ebeid began discussing surgery on her valve at this point,
and said he was worried to wait much longer. He waited another month, and
decided to just go in the cath lab to take some exact measurements before
making any more decisions. He had mentioned speaking with a surgeon in Boston,
but said we’d talk after the cath. When he went in, he saw that the echo
readings were off because of a second narrowed area. This cleared up the
confusion he was having about her test results, and he felt much more
comfortable with her situation. He told us we could definitely wait on surgery
for now. When he had discussed the surgery with Dr. Jonas, Dr. Jonas had
disagreed with Dr. Ebeid and didn’t want to do the surgery because of the high
risk any way. So, once again, we went on with life, and things seemed fine.
The next month, Jake was unable to go to the cardiology appointment, so I took
Avery alone, thinking nothing had changed. The echo showed that Avery’s heart
function was bad and the doctor said it would only get worse. He told me that
the surgery needed to happen soon. He told me about Dr. Bacha, who was
previously in Boston but had recently moved to New York. I told him to move
ahead and contact Dr. Bacha, and we’d make a decision based on what he said.
Upon researching Dr. Bacha, I saw that valve replacement was his specialty. I
also saw him interviewed and he seemed to be such a kind and caring man- not
cold and distant like some surgeons can seem. He also had children of his own,
and had been researching to find less invasive ways to heal children. I felt
really good about what I saw, but was nervous about taking Avery all the way to
New York for surgery! It all happened very quickly. We were contacted by Dr.
Bacha, and next thing I knew, we were booking a flight and a hotel in Jersey.
You would think the situation would be ridiculously stressful, but it actually
went pretty smoothly. God was in control, and he made things happen. I was so
busy getting everything in order, I didn’t have time to worry any way. I was,
however, a little concerned about how we’d pay for everything, and what I would
do about my job. I only had a few sick days left due to my pregnancy
appointments and Avery’s appointments.
Amazingly enough, people (lots we didn’t even know) began to just give. We were
given large sums of money, someone scheduled our flights with flyer miles, my
co-workers donated sick days (58 to be exact)- EVERYTHING was taken care of,
and I was able to just take care of Avery. I have never been more thankful or
more humbled in my entire life. I felt so loved and touched by everyone’s
generosity, concern, and prayers. I began to wonder why God was so good to me,
and I realized even more that his plan for Avery was much bigger than I could
ever imagine.
Avery at Morgan Stanley Columbia-Presbyterian Children's Hospital of New York
The prayers for her came from all over- even in other countries.
So many people followed us in New York through Facebook- it was crazy. We got
through the surgery, which lasted about six hours. We were beginning to sit on
the edge of our seats because we had originally been told it would be 3-4
hours. There were also no updates during this time, so that was hard. Once I
saw Dr. Bacha walking in the waiting room nonchalantly with a Diet Coke and a
smile, I had a feeling of relief rush over me and cried for the first time. I
also praised God for sending us when he did. Dr. Bacha said he was very
relieved we came when we did because Avery’s heart was doing worse than they
even knew it was from what he saw once he opened her up. It’s just another way
God lets me know that his timing is perfect- he is perfect. It’s so hard to
even remember every little thing that God did because there were so many things
throughout this process. I was worried about Avery getting sick and I was
worried about the flight- I prayed and Avery remained well and was excellent
throughout the flight. I prayed for a quick recovery, and we were able to
return home 2 weeks earlier than we originally were told. I prayed when we were
told Avery would have to return to PICU once we were on the floor due to a
large amount of air in her lungs. Dr. Bacha suddenly appeared and stopped the
other doctors from sending her back. People prayed that night, and the air in
her lungs was gone the next day. She did so well the next day, as a matter of
fact, that we discussed being discharged. We got to leave the day after that!
We remained in New York for several days until the post-op appointment.
Avery
was still scared and shaken, but doing well otherwise. She was completely
checked out at the post-op, and everything looked wonderful. We flew home the
following day.
Our "Thank You" picture- We ♥ New York!
We went to see our local pediatrician, and she told me I just had no idea how
good Avery looks for a heart baby coming back from surgery. I also overheard
her in the hall speaking to another doctor about how amazing Avery is, and that
she looks like nothing had even happened to her! I felt very special hearing
her say that. There may be more surgeries in our future, but God is helping us
take things one day at a time. People say they don’t know how I deal with it so
well, and some seem to feel sorry for us. I, on the other hand, know that
things are very different when you’re actually in this situation. You learn how
to truly trust because it’s all you can do. There’s nothing I can do here- God
is the only one with that power. I feel extremely blessed rather than burdened.
If anything, I see how so many others throughout our hospital stay have it so
much worse than we do. Knowing he is controlling this situation, and that he
has a plan, makes life a beautiful adventure, and I am so excited to see what
is in store for my family.
Avery's First Birthday
Avery's Second Birthday
Avery's Third Birthday
Avery's Fourth Birthday
Update: Avery Elizabeth is now four and a half! Avery sees her cardiologist every 6 months. We recently had a check-up and everything is still working well. Avery does have some leakage in her pulmonary (cadaver valve); however, her heart is handling it well. She shouldn't need valve replacement surgery for at least a few more years unless something changes. She is no longer on any heart medications! Avery is still taking daily injections of Genotropin growth hormone and is growing well! Her kidneys, which had multiple cysts on them, are better. She continues to take daily antibiotics to prevent infection with her kidney reflux. We will look at surgery to repair them if it hasn't resolved by her appointment in the fall. Thankfully, Avery hasn't struggled with infection, so her doctor has allowed us to wait! She is also on Synthroid for her hyperthyroidism. Other than catching lots of viruses more recently, Avery is in great shape! She is an awesome big sister to our one year old son, Bryce. She began taking ballet and tap dance classes this year, and recently participated in her first Christmas program at preschool. She is making big strides with speech therapy (articulation), and she gets better and better each day with her lessons. She is writing her first name well on her own which was a big deal to us! We plan to either have her do one extra year of preschool or complete Kindergarten twice to make sure she is mature and ready for everything coming her way. She may be a little behind, but she always catches up right when we start to worry! Avery is one energetic, fun-loving, and headstrong little red-head, and we couldn't be happier with our special blessing! Thank you for reading our story of hope!
