At 28 weeks pregnant I had some spotting. It was minimal and I knew it was probably nothing, but I called the doctor anyways just for peace of mind. I was scheduled for an ultrasound the next week so they just told me to come in and we would go ahead and do the ultrasound a little early. I was right, there was nothing that indicated the bleeding had been from a complication. However, there was something else that they saw. My baby boy had something wrong. It was his heart. My doctor briefly explained what they were seeing but wanted me to see a specialist for a more thorough examination and diagnosis. Everything was a blur; I couldn’t process the words my doctor was saying. Something was wrong, really wrong, and I couldn’t get myself to understand it. How was this in God’s plan, why was my miracle baby sick, what did I do wrong? The motions started streaming by; the plan unraveled in front of me. Now just put one foot in front of the other. Trust God and pray with a fierceness I’ve never had before. We immediately saw the high-risk OB who confirmed there was something wrong with my baby’s heart. He told us the left ventricle was enlarged and not functioning properly. There were a couple reasons this could be, but we needed to see a cardiologist to make sure. He set us up with a pediatric cardiologist who we saw the next day. Time was of the essence and it all happened so fast. I can look back and realize two things. One, it was critical that we see the specialist right away. These doctors have full schedules months in advance. They don’t squeeze you in last minute unless it’s very, very important. And two, the path I was blindly walking as everything whirled by me, was miraculously orchestrated by my Father. Every single moment was laid out perfectly and fell into place just right so that we could save my miracle boy. The cardiologist confirmed that baby’s left ventricle was in bad shape and this was due to critical aortic stenosis. This was his official diagnosis, critical aortic stenosis. The aortic valve should have three flaps that open and close to let blood flow out properly, a tricuspid valve. His valve was a unicuspid valve meaning it only had one flap. It was thick and sticky and barely opened. This caused very bad blood flow through it. Since the blood could not leave the ventricle it caused a lot of pressure on the ventricle and prevented it from properly contracting. His left heart did still have some function, but it was decreased and could worsen and stop all together. This was the biggest fear. Then his condition would be called hypoplastic left heart syndrome. HLHS. If he were to be born with HLHS he would be immediately taken into surgery for the first of a series of surgeries to reconstruct his heart into a single chambered heart instead of the normal two chambers. This would change his life forever, but he would live. Amidst all this horrible, incomprehensible news we were receiving I had that. He would live. And I held onto that with every ounce of strength I had. Next we spoke to the fetal intervention team. There was another option, and we were great candidates for it. There was a procedure called a balloon aortic valvuloplasty that could be done intrauterine. I would have an epidural and they would use a needle to go into my uterus through my abdomen. They would be guided by an ultrasound as they placed a balloon into his aortic valve and blow it up using saline in an attempt to tear open the valve and allow blood flow. There was a risk of preterm labor. There was also a risk of fetal death. This procedure was rare and so was his condition. There wasn’t much data on previous cases to give us a clear-cut answer. The risks were only about 5% but they were catastrophic risks. There was no in between. An “unsuccessful” procedure meant fetal death. If the balloon valvuloplasty worked it would give him a 50% chance of being born with a two chambered heart. Without it he had a 10% chance of being born without HLHS. This was one of the hardest decisions I’ve ever had to make in my life and there was no time to make it. I was 28 weeks and the cutoff for this procedure was 30 weeks. The only place in the country performing the procedure was Boston Children’s Hospital. They pioneered this fetal intervention procedure 10 years ago. They do about one of them a month with a total of 160 overall. Again, his condition is very rare and even more rare was the opportunity as a good candidate for the balloon valvuloplasty. I sat and prayed with such ferocity. And the answer was there, my baby needed this procedure. He needed this chance at the most normal life he could have. And he was my miracle, God had more plans for him still. So, on Saturday December 19th, Kevin and I left our girls with my parents and flew to Boston to try and save our sweet Jack’s heart.
Kommentare