About 80% of babies with Trisomy 13 have heart malformations.  Most often they only have two or three chambers of the heart (when there should be four) or they are missing arteries or ventricles, or they have holes in the heart, or the heart is on the wrong side of the body, or their mitral valves are not working correctly or are missing.   Now, I am no heart expert, so I’m not using the exact medical verbiage here…but hopefully you get the idea.  Trisomy 13 babies usually have major heart issues, and not just one of the above issues, but two or more.  So naturally this is what I was expecting to see when we went for our first ultrasound.

During that first ultrasound (at 17 weeks) the perinatologist saw that Aaron has four chambers of the heart, that his heart was located on the correct side of his body, and it wasn’t missing any arteries or ventricles.  In fact, it looked pretty darn good! What a surprise it was for me to see that! But … there was obvious back flow of blood going back up into the top chamber on the left side. He had either an underdeveloped mitral valve, or he had one that just wasn’t working properly. Either way, that wasn’t a good thing.

I spent the next four weeks specifically praying for that faulty mitral valve.  He has other things that are of a concern (which I’ll get into in another post)  but this time I focused on his heart.  Lord, I asked, if you could just fix that one mitral valve in his heart, then he will have a strong, healthy heart.  Just that one little thing? Please, Lord?  Of course I also prayed for his overall health, but I specifically asked for his mitral valve to be healed.  Over and over, a few times a day.  At night before I fell asleep. In the morning when I first woke up.  I constantly prayed and asked for that mitral valve to be fixed.

Then, at his next ultrasound four weeks later, the doctor could no longer see any back flow in that chamber.  She was surprised, and she spent a lot of time looking at his heart during that visit.  The mitral valve seemed to be working perfectly fine. So she referred me to a pediatric cardiac specialist just to be sure.

She thought perhaps she was missing something.

I thought perhaps the Lord fixed my baby’s mitral valve!

Today was my appointment with the specialist. My appointment was at 1:00 but yet I wasn’t taken back into the exam room until 1:50 (grrrr….don’t you just love that?)  When I was finally taken to the exam room, an ultrasound tech did the first exam.  It lasted about 30 minutes and seemed very detailed.  She measured everything, took many images and videos and listened to his heart a few times.  Then after she was done, the doctor came in. He did an even more detailed exam than the tech did.  He pressed hard on my belly to get the wand in there as close to the baby as possible. He said he wouldn’t press hard if it was hurting me.  I said so long as it wasn’t hurting the baby, do not worry about me.  I had to turn on my side a few times so that we could get the baby to shift positions.  I think the exam with him took about 40 minutes. I felt like I was there on that exam table forever.

The final result?  Aaron appears to have a perfectly normal heart.  In fact, the doctor said that if he didn’t already know that Aaron had T13, he would think his heart is the healthy heart of a typical baby. So this makes me happy.  Why? I don’t know, exactly. I guess because he’s got so much going on in his DNA that isn’t right, it just makes me feel good to know that his heart is right. A strong heart means he has a good chance to make it to term and be born alive.  So many mamas of T13 babies never get to hold their baby while he or she is alive. If him having a strong, healthy heart means that I get to hold him while he’s still living, that I might get a day or two with him, or even more, well that is a blessing that I will gladly take.

at the beach with Aiden and Baby Aaron: 24 weeks pregnant

Bottom line:  a strong heart may buy us more time with Aaron.  And that’s what I really want. Time. Just time with my little boy before he goes to Heaven.

~  Katrina

Click on the links to read more about Baby Aaron and our choice to Carry to Term