David's Story

On September 19, 2010 when I was 33 weeks pregnant I was admitted to the hospital for contractions.  At 4:00am on Monday, September 20, 2010 David was born by emergency csection when my placenta abrupted. 

 

 He was immediately taken to the NICU because he was having problems breathing on his own.  A few hours later 2 doctors walked into my hospital room.  They told us they were pediatric cardiologists and that David had a severe heart defect, Hypoplastic Left Heart Syndrome.  The nurse noticed that his feet were turning very blue and he had weak pulses in his extremities. 

 

It was never picked up on any of my prenatal ultrasound.  We were told we only really had to options- comfort care or staged surgeries.  Heart transplant was not really an option for us because of his prematurity.  We opted to try the staged surgeries.  David was transferred to the PICU at the Cleveland Clinic.

 

They had decided to try something a little different with him because of his prematurity.  Instead of doing the traditional Norwood or the traditional Hybrid, they decided to try keeping him on prostiglandins and putting bands on his pulmonary arteries (PA banding) to restrict some of the blood flow to his lungs.  The thought was to allow him to get a little bigger so they could do the Norwood.   That seemed to be working well for a little while.

 

After a few weeks we got a phone call that David's oxygen saturations were in the 30s and his C02 levels were dangerously high.   His PDA started to close, even on the prostigladins, and the bands were too tight.  He was rushed back for surgery to loosen the bands and stent the PDA.  It took numerous other trips back to the OR to get the bands the correct tightness. 

 

David also had 5 cardiac catheterization.  He had stents in his PDA, through the retrograde arch, and atrial septum. The stenting caused tricuspid regurgitation (leakage of the tricuspid valve), and during his last cath his pulmonary valve tore, causing regurgitation of his pulmonary valve.  David also had many feeding issues and was never able to drink out of a bottle. 

 

Because of the issues with his oxygen saturations and being premature he had developed severe brain damage known as PVL (cysts on his brain).  Over 75% of his brain was effected.  During one of his CT scans they also noticed that he at some point had had a stroke.  EEG leads were put on him and it was discovered he was having over 20 silent seizures per hour in the area where the stroke occured. 

 

On January 13, 2011 we were told there was nothing more they could do for David.  His body wasn't strong enough to handle such a major surgery like the Glenn, his wound still hadn't healed from his surgery over a month prior, he had been having unexplained fevers for weeks, and bloodresults showed he was in heart failure. David was still intubated from his last surgery and we chose not to take him off the ventilator.  I spent the next week in bed with David, cuddling him and telling him how much I loved him. 

 

On January 20, 2011, at 4 months old, David went to be with Jesus.  Mommy, Daddy, and his big brother were the only ones in the room with him when his heart stopped beating on it's own. David never got to come home. Not a day that goes by that we don't think about him.  He is still very much a part of our lives.  His big brother talks about him all the time and blows kisses to his baby brother in heaven.  We share David's story with anyone who will listen. 

 

I want every expectant mother to know the importance of making sure the ultrasound tech gets a good look at their unborn child's heart.  Research shows that prenatal diagnosis leads to better outcomes for babies. David's life can be read at www.caringbridge.org/visit/davidlibby