Ryan's broken heart

Since Ryan's death almost eight months ago, a multitude of people have asked me exactly what was wrong with his heart and why it couldn't be fixed. I've always tried my best to explain it in proper detail, but, as I've unfortunately learned, the heart is a very complex organ and quick explanations of problems aren't always possible.

I've decided that it's time for me to best describe his condition and the timeline, not just for others, but for my own personal record. As vivid as so many details are now, I know that they will eventually begin to fade as time marches on. And, as horrifying as many of the specifics are, I never want to forget any of them. Forgetting those confusing particulars would mean I've forgotten something of great importance about my beloved little boy, and I can't ever allow that to happen.

Ryan was originally diagnosed with aortic stenosis, a narrowed or pinched area in the aorta. If that had been his only problem, he more than likely would have survived with a heart catheterization to open up the blocked section in his aorta. He was transferred to the uptown hospital - where they are better equipped to handle pediatric heart patients - just seven hours after he was born. He was admitted to the new hospital just after 1 a.m. on August 10.

Mike called the uptown hospital around 9 that morning and spoke with Ryan's NICU doctor, who informed us that Ryan's condition was much more serious than originally thought. In addition to his narrowed aorta, his left ventricle was underformed and his mitral valve was stenotic as well. His condition was very similar to Hypoplastic Left Heart Syndrome (HLHS), which is a fatal condition without intervention in the form of either a heart transplant or the Norwood procedure, a series of three open-heart surgeries.



In utero, the fetal heart functions differently and the left ventricle - which helps to pump oxygen-rich blood into the body - is bypassed since the mother and placenta are doing the baby's breathing. That difference in fetal heart function is why Ryan's defects weren't picked up through ultrasound; his body was being supplied his oxygen-rich blood through my breathing and the placenta, so all appeared to be well and functional. It was only after his heart was required to work on its own, outside of the uterus, that the severity of his condition was discovered.

The doctors were treating Ryan as a HLHS patient, even though he had only some of the symptoms - but he had the most serious, life-threatening ones. Prostaglandins were administered in hopes of keeping that fetal pathway open, taking some of the pressure off the over-worked right side of his heart. He was stable and all seemed to be working until late afternoon on August 10.

Ryan began to crash (his pH level was very low) and it was suggested that he undergo a heart catheterization to keep that fetal passageway open, buying him more time until other permanent treatment could be decided upon. That surgery was successful, and almost immediately Ryan's pH level and body color returned to normal.

He pulled through another night and seemed to be relatively stable on August 11. The doctors kept him sedated to allow his body to rest and regain some strength, since it was suggested that the first stage of the Norwood procedure might happen in a few days; the team of cardiac surgeons were meeting the next morning to work out their game plan.

Around dinnertime, I received a call in my hospital room, telling me that Ryan was crashing again. By the time I reached the NICU, he had somehow bounced back and was stable, but still not good. We spent as much time with him as we could before heading back to my room around 8.

The phone in my room rang again around 9:30 that night and we were told that Ryan was not well at all. We rushed to his isolette and at that point, the doctors had already given Ryan all the drugs they could to stabilize him, but his body wasn't responding. They advised that the maximum dosages had already been administered, so they couldn't take the risk of giving him even more, possibly damaging other healthy organs. His pH level was dropping again, signaling that his kidneys weren't functioning properly, either.

One of the nurses kept "bagging" his little body, forcing air into his lungs, but his condition had deteriorated so rapidly that all hope was lost at that point. His frail body just gave out. Shortly after the nurse stopped breathing for Ryan, he passed peacefully in my and Mike's arms.

Even with a half-functioning heart, my little boy fought so terribly hard for his little life - so hard that he had to be sedated so allow his body to rest. Unsedated, he was looking at everything going on in the room and turning his head in the direction of any noise he heard. He responded to every one of my touches and kisses - the only contact we could manage through the slew of machines monitoring his condition.

I only heard him cry once. I held him just twice - before his surgery and as he grew his angel wings. And, if there had been any way that it could've been me and not him in that situation, I would've done it without a moment's hesitation.