Sunday, October 23, 2011

Spina Bifida Awareness: Meet Aiden!

Today we get to meet Aiden!
His mommy is sharing with us:

Here is Aiden’s story (he is my 3 month old son)….

Our beautiful journey with our son, Aiden, who was born with Spina Bifida, began with a 3D/4D ultrasound.

We have two other children(Ashleigh and Andrew), ages 4 and 14 months at the time, and this would be the only way they would have the opportunity to accompany us to an ultrasound to find out our babies gender. I was 15 weeks pregnant at the time and went in hopes of knowing our babies gender. Within minutes of starting the ultrasound I knew something was terribly wrong with our baby, you could see it all over the sonographer's face-she was mostly focusing on our babies head and heart. She asked our mothers to take our children out of the room and informed us that our unborn son (yep, we were able to see he was a PROUD boy!) had serious medical problems that included his head and heart.

We were terrified.

 Of course she was not allowed to tell us what was wrong but I left there that day just praying it was something my son could survive.

The next day we had an appointment with Maternal Fetal Medicine and were quickly informed that our son had Spina Bifida and a heart defect. My first question was (since I was not familiar with SB) “Will he survive?” There answer was “in regards to Spina Bifida, of course he will!” but he was still too little to know about his little broken heart.

I was never in shock or upset by his diagnosis of Spina Bifida. I suppose it was partially because the day before I thought my son might die and because we were so unsure about his heart. A few weeks later he had a fetal echo and was diagnosed with a serious heart defect called Tetralogy of Fallot and would need open heart surgery soon after birth. We began our almost weekly appointments and debates on what steps needed to be taken after birth. It was decided that the myelo repair needed to happen first.

After they realized he had multiple birth anomalies we had an amniocentesis to check for chromosomal abnormalities and they came back positive for 22q deletion syndrome (also known as DiGeorge’s Syndrome). 22q has a wide range of symptoms (SB is a rare one) and affects health and learning/social as well. I felt like everything was spiraling out of control and feared what was next. More diagnosis came throughout the pregnancy: solitary kidney, hydrocephalus, suspected cleft pallet(although he does not have that).

 We were so nervous about delivery day although it was a miracle in itself that I made it full term with him as I developed polyhydramnios around 7 months of pregnancy with him. But we made it and although the doctors feared he would be on a ventilator immediately after birth and require immediate attention to his heart, Aiden proved them wrong! He came out kicking, screaming, and perfectly pink!

 He spent the first two days of life breathing room air (praise God!!!) and had his myelo repair at 2 days old. He sailed through that with flying colors and started eating by mouth the next day. Oh yeah, did I mention the doctors told us during the pregnancy not to expect our son to eat by mouth ;)

 At one week old his neurologist decided it was time for a shunt due to hydrocephalus so at 7 days old he went in to surgery for a VP shunt. He was a little ornery recovering from this surgery but within a few days was eating mostly by mouth (because of his heart condition he would wear out easily and would gavage the rest of his feeds) and healing nicely!

 Aiden, our big sweet boy, was able to grow strong until 6 weeks old until he required open heart surgery. So on August 26, 2011 we sent our son into open heart surgery scared out of our minds. After six long hours he was sent to recovery doing pretty well. He spent another 3 weeks recovering from OHS and we were finally able to bring our sweet little guy home after 9 weeks in NICU/CICU! What an incredible day that was!

He has now been home for a month  and continues to amaze us each day. His strength and determination is incredible. We praise God that he not only eats by mouth since he’s been home but he BREASTFEEDS!!! He no longer requires oxygen, only came home with an apnea monitor and does all of the fun baby things we would expect him to do: eat, sleep, and poop!

We don’t ever look at him as Aiden 22q, Spina Bifida, Hydrocephalus, Tetralogy of Fallot as the doctors see him…he’s just Aiden-cute, cuddly, amazingly perfect gift from God! We are so blessed with our sweet little boy and although I would never wish for my son to be in any pain or face obstacles in this life, I would also be glad to walk this journey a million times over because my heart swells with love and happiness every time I look at his sweet face!

Thanking God every day for our sweet blessings!

Thank you Kayla for sharing your precious boy with us!


{april kennedy} said...

Kayla, I feel the same way you do...we'll take the SB journey any day to have experienced the joys and blessings we have received. Thank you for sharing your family's story. God bless sweet Aiden and your other two sweet children. God knew what he was doing when he gave us our other children to be amazing siblings to these special ones. I call my SB kid our little miracle...and our daughter 'our gift from God'!