I am just over 20 weeks pregnant. At this point the baby’s heart is about the size of a quarter.
We found out yesterday that a quarter of this quarter has not formed properly. The journey has suddenly changed from picking out baby names to selecting heart surgeons.
I knew something was wrong when the tech kept scanning the baby’s heart. Bill Cosby once joked that when dentists mess up, they all say the same thing: “Rinse.” When an ultrasound tech finds a problem, she says, “I’m going to try to get a better picture.”
My child was not particularly cooperative. The baby kept turning and twisting. The little arms were crossed over the chest, as if wanting to keep the bad news a secret. The initial ultrasound took well over 1½ hours. Then the Maternal Fetal specialist came in to take his own look. For another 45 minutes. His first question was whether or not I had any genetic testing done. My own heart sank.
The chances that this little baby has Down’s Syndrome are now 50%. This heart condition is considered a hard marker for Downs. Nothing else on the ultrasound indicates Downs. The nose, neck, abdomen, kidneys, arm and leg bone lengths are all normal. But the doctor wants me to have a blood test for Downs that is 99.5% accurate. While it won’t change the outcome, it will be good information for us to have as we prepare for a different future. I hope to have the blood work done today. The results will take at least 10 days.
I went back later in the day for an echocardiogram performed by a pediatric cardiologist. This specialist is only at our hospital twice a month. Yesterday was one of those two days. He graciously agreed to see me after hours.
There are two problems with the baby’s heart. Here is the cardiologist’s drawing of a normal fetal heart. In a normal heart, the right and left ventricles are balanced, meaning they are approximately the same size. There are also two valves. The tricuspid valve separates the right atrium from the right ventricle. The mitral valve separates the left atrium from the left ventricle.
And here is the drawing of my child’s heart. There are two problems. The right ventricle is twice the size of the left ventricle, known as Unbalanced AV Canal (or Right Dominant). And instead of two valves, there is essentially one big hole.
Bottom line, this baby needs heart surgery. Fixing the valve problem is significantly easier then fixing the unbalanced chambers. The valves can be repaired with one surgery. The unbalanced chambers present a more difficult challenge which would require multiple surgeries that vary in their success rates.
But, there is a possibility that the situation could improve. I know that some of you pray. Others mediate or think positive thoughts. I humbly ask that you focus any prayers and thoughts you might offer on one thing: for the baby’s left ventricle to begin growing.
I suppose we all need our hearts to grow in one way or another. And that’s a good thing to pray for too, especially during this time of great suffering in our country. But I need my baby’s heart to actually grow.
The outcome will be much better if the right and left ventricles are balanced. If that can happen, the baby will be need one surgery at 1-2 weeks of age to simply correct the problem with the valves. Although I can’t imagine that there is anything simple about open heart surgery on a tiny human.
If that doesn’t happen, the baby will require 2-3 surgeries with no guarantee of a successful outcome. There is even the possibility the baby would need a heart transplant. I have so many questions and we will meet with the surgeons in the next few weeks to begin getting some more answers. The next month will determine if I can deliver at my local hospital with my OB. I’ve shared everything that I know.
I do believe in miracles! And so I will hold out hope that God will miraculously heal my little one’s heart. Totally and completely. In a special way, I am praying to Blessed Columba Marmion, the patron of my son’s high school. He needs a miracle to be declared a saint in the church (Blessed Marmion, not my son). Maybe my child is his big chance.
He was a prolific spiritual writer and an Irishman of great wit. Once, he tried to enter England from Ireland without a passport. He was refused entry. Marmion responded, “I am Irish and the Irish never have a passport… except for hell, and… it isn’t there I am wanting to go.” His quick humor elicited laughter and entry into the country.
I also pray that my heart will grow in acceptance of the situation. As long as this little one is growing inside me, he or she is safe. My heart will take care of both of us. The doctors want me to have as healthy a pregnancy as possible. The best outcome is for me to have a full term baby (now defined as reaching the 38 week mark) that is as big and strong as possible. Rocky has declared that I can eat nothing but kale. And the kids are determined to make sure I exercise daily despite still feeling so miserable. I am surrounded by an army of love.
Now, yesterday wasn’t all sadness and gloom. When the tech asked if I wanted to know the baby’s gender, I said no but that I would be trying to figure it out on my own. To the untrained eye, ultrasound images look like the surface of the moon. But I was fairly confident that I had diagnosed it spot on. And I was feeling rather proud of myself.
Then the tech told me to look at the baby’s profile and a lovely little nose. Which wasn’t what I thought it was.
As Dolly Parton says, “Laughter through tears is my favorite emotion.”