William “Blake” Galligan joined our family at 6:10 AM on Tuesday, April 29, 2008. Born at 35 weeks, he was a beautiful and sweet boy; we were so lucky to welcome him to our family.
On April 30, at one day old, Blake was diagnosed with a rare heart condition called Hypoplastic Left Heart Syndrome. Essentially, only the right side of his heart developed, leaving the left side and his aortic arch very small and unable to perform it’s function (pumping oxygenated blood to the body). We were unaware of his condition because the pregnancy was very healthy and normal and all four chambers of his heart were developing normally at his 20-week ultrasound. The doctors believe he suffered a heart attack or similar trauma in utero at some point after this ultrasound. We were very lucky that the doctors caught it so early.
This condition is very serious; the doctors gave us three options to consider:
1) let him pass
2) put him on a heart transplant list
3) submit him to a series of three open heart surgeries that will never ‘fix’ his heart, but will extend his life and improve the quality of his life.
We are fighters in our family, and there was no way we were going to let this angel leave us without a fight.
We live in Austin, Texas and decided that we wanted his surgery performed at Texas Children’s Hospital (TCH) in Houston because they are renowned for their successful treatment of this condition.
On May 2, Blake was transferred from Austin via Star Flight to TCH. Nobody was allowed to fly in the helicopter because they had four nurses to keep him stable, and there just wasn’t any room. My husband (Bryan) went to Houston ahead of the helicopter to be there when Blake arrived, and I stayed in the hospital with him to see him off from Austin. The trip was a success, and he was immediately placed in the NICU to be assessed by a new team of doctors.
Blake stayed in the NICU for a week, during this time he remained mostly stable, however he was losing weight (because he was only being fed through a feeding tube) and his blood pressure got low several times and he had to receive blood transfusions. We knew it was very likely that Blake would need blood during the operation we opted for our family to give directed blood. I didn’t qualify because I had a c-section, however, Bryan and our extended family gave blood that was available to Blake during surgery.
During this time we also decided to enroll him in a clinical trial intended to improve his neurological outcomes after surgery. Doctors have discovered that some children are suffering developmental delays post surgery and they suspect it is due to lack of oxygen to the brain. As part of the trial he got an MRI before his surgery, a MRI post surgery, and his brain waves were monitored for 24-hours post surgery.