This Month's Featured Family!
Unilateral Cleft Lip/Bilateral Cleft Palate
Spina Bifida, Arnold Chiari Malformation Type II, Hydrocephalus,
Deformed Stenotic Mitral Valve, VSD (Ventricular Septal Defect),
Double Outlet Right Ventricle
One year ago today, we were told that our baby had multiple defects. One year ago tomorrow we were told that it was more then likely she was a trisomy 13 baby. One year ago, doctors were telling us we should go for a late term abortion. They told us that with the heart defects, the baby would never sustain life. They told us that she would most likely be still born.
When the amnio came back normal, they told us that if she were born alive she would suffer. They said that she would probably never take a breath, and if she did, she would be a shell of a baby.
They quickly passed us on to a new set of doctors, because they felt that the risks were to high for them to continue to see me through my pregnancy, they were against carrying to term.
When Kailey was born, she was never expected to live. Kailey’s spine was exposed from S1-S5, with the muscles above the spina bifida affected as well. Her heart had a hole in between the bottom ventricles, her aorta was on the right side, rather then the left, and her mitral valve was extremely deformed and not passing the blood well. She was born with a cleft lip & palate as well as Chiari malformation & hydrocephalus.
We were told to expect a 4 POUND BABY. Instead we had a short 17”long chubby who was 6lbs 10oz. She was born crying and pink. This was a miracle in and of itself.
That night, the doctors sat us down with a cardio thorasic surgeon, and the neurosurgeon. At the time, Kailey was in congestive Heart failure. Because her aorta was on the right side of her heart, she had too much blood pumping to her lungs, and not enough pumping to her body. She was on a vent, and feeding tubes. She had so many Ivs and wires, that there hardly a place to touch her. Her heart was so bad at that point that surgery for the spina bifida was impossible. The neurosurgeon had very little to say. Just that once, she is stable, he can operate, but if she doesn’t become stable she would most likely contact meningitis. The Cardio Thorasic surgeon had worse news for us. He told us that Kailey’s valve was shaped more like a triangle then an oval, and that it didn’t really flap open to allow blood to flow. Instead the blood was on a very slow drip. The only option he could offer was a heart lung transplant. He also said not to get our hopes up, since hearts and lungs are very rare to be donated together, especially to a child with so many disabilities. He explained that if Kailey had had a hypo plastic left heart, they could bypass the left side, and allow the right side to do all of the work. But since she was so unstable that was not an option either. Beside, he felt she would then be a cardiac cripple. He explained that a mitral valve replacement was an option only for older children and adults. By the end of that conversation, we signed a DNR, and had Kailey baptized. We spent a few hours saying hello
and goodbye. We believed with all of our heart that it was the last time we would see her alive.
At about 6:30 AM on Valentine's Day, a team of doctors came storming into my room. We assumed the baby had died. When the neurosurgeon said that she was
all prepped and in preop, and he needed a signature.. I had no idea what he was talking about. He was in a rush, and I did not comprehend what was happening. The Neonatologist carefully explained that while there was no explanation for this sudden change, Kailey’s heart was functioning perfectly! She was stable enough for the
surgery on the spine. Hours later, we were told it was the most uneventful surgery ever, and she did great. The neurosurgeon was near tears when he said to me, “ I need you to know that your child is a miracle”.
From that day forward, Kailey faced many battles, but has overcome every single one, with grace and strength.
Kailey’s biggest problems in the NICU were numerous. She was on and off a vent numerous times. She succeeded in ripping it out, and had to be kept in a medical coma quite often. She hated tubes, and ripped out Iv’s and feeding tubes, oxygen vents and umbilical lines. She would throw herself into what the doctors referred to “episodes” when she would be reinitiated. Her heart rate would rise, her oxygen sat would go down, and she would lean toward CHF (congestive heart failure). She had a few bouts with a collapsed lung, and also with being septic (which occurred by unsanitary practices. For example, a nurse washing her hands poorly before suctioning or drawing blood).
Within 79 days of life, Kailey had the surgery for spina bifida, a band placed on her pulmonary artery (to decrease flow of blood to the lungs), a VP shunt, open heart surgery to replace her valve with a mechanical valve, close the hole in her heart, and put her aorta on the left side. Along with someo ther small procedures like cardiac caths, and MRIs.
The doctor who said Kailey’s heart was pretty much hopeless, has never been seen again. A wonderful doctor who saw hope in her, offered to do an extremely
controversial procedure, by placing an adult sized mechanical valve in her little heart. It was placed on a diagonal angle, and has been working like a charm!
Through out the 79 days that Kailey was in the NICU, the cleft team never saw her. Every time we asked about it, we were brushed off with talk of there being more pressing issues.
When we brought Kailey home, I posted
the news on the Cleft Advocate Family-to- Family Connection. Whitney contacted me off list, and offered some help. Whitney lives in my area, and got me in contact with her cleft team coordinator. We were finally moving forward!
We contacted Early Intervention and started feeding therapy almost immediately. Kailey also receives PT, OT, and special instruction through Early Intervention.
Kailey’s lip repair was done this past September. The results are still astounding to us! Kailey was smiling the day after surgery and hasn’t stopped since!
The support and the friendships that we have acquired through Cleft Advocate are priceless. I don’t know where I would be with out the love and the laughs that receive here daily! I only hope that I can help someone out as much as so many members here have helped us!
Feature of the Month
Stories of Craniofacial Care and Inspiration
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This cleftAdvocate page was last updated March 25, 2014