This is a continuation of my story of infant loss, from 4 years ago. If you’d like to read from the beginning, you can start with Finding Out There Is Something Wrong With My Baby.
At my last appointment with the Perinatologist, I received my amniocentesis results, which stated that my baby girl WAS NOT a Trisomy 18 or Trisomy 13 baby. This was more than a huge relief because it meant that she COULD live! Any sign of hope during this very challenging pregnancy was Godsent. The next step was for me to make an appointment with the Pediatric Cardiologist, for my baby. I didn’t even know that cardiologists saw pregnant women, for their babies.
I was nervous going into the appointment, but my little girl’s cardiologist was about the kindest doctor I have ever met! He was very sweet, patient, and explained everything he saw to me. When dealing with something so serious and tender already, it is so helpful when the doctors don’t keep you in the dark. He broke everything down into terms that I could understand. After the ultrasound, we came to the conclusion that my baby had a ventricular septal defect. This is a defect in the ventricular septum, which is the wall dividing the left and right ventricles of the heart. Of course, anything wrong with the heart can be very scary, but it sounded like this was very treatable and not the worst of our worries.
Because my baby obviously had a lot of problems, he thought she would possibly need surgery, and maybe more than one. However, the surgery wouldn’t need to happen right after birth. The doctor would keep a close eye on her after birth, and monitor her, to see if the hole would close on it’s own. If the hole needed to be repaired, then it would have to be done within the first year of life. This I could manage. One issue down and many more to go! Because ultrasound is not 100% accurate, then a lot of the deformities and problems that the doctors thought they saw in my baby, we just had to wait until she was born, to see just how severe they all were.
At this point, I was scared for my baby to have to have surgery, but with all of the scares and problems that we had heard to date, this was OKAY. After a couple of weeks, I visited this wonderful Pediatric Cardiologist again, for a follow-up, and to check on my little girl. Things were about the same – we just had to wait and see how her heart handled this hole, after she was born. No specialty doctor appointments scheduled, and just had to wait. I saw the perinatologists about every two weeks, until about 26 weeks, when I went into pre-term labor. That will be my next post. Sigh…
My next post is up: An Ambulance Ride and A Week In The Hospital, On Bed Rest.
Heather Hazen says
::Taking deep breaths with you, Love::
Michele says
My son had this also, it is very scary. Praying for you!
hannah says
I saw your post and had to comment 🙂 my son also had a Bsd when I wad pregnant but as I kept going to the doctor it kept looking a little better each time. He had a cardioligist present at his birth and he was fine, he just had a slight murmur bug when he reached two years old it was gone….thoughg i would share a positive outcome with you…. I will keep you in my prayers 🙂
hannah says
Man the auto correct really got me in that last post…feel free to delete it
Emily Lyon says
Thank you for sharing Hannah! I love hearing people’s positive outcomes! Mine was not as such, but I think it is very hopeful and reassuring to hear those positive stories. It can give strength and hope to many!
nicole says
Hi, ok, i am so happy to hear baby Giannas amnio is ok. o my daughter Gianna had vsd also. I was told they would have to wait and see how large it was. I had an echocardiogram done in utero to see bloodflow etc. There they found an arterial septical defect and a coarctation of the artery(narrowing). I was told surgery would be needed , just not when. I went into preterm labor,and she labored fir a week, until her cardiologist said, she was going into heart failure and surgery would be done asap. Sge had open heart surgery and babies bounce back very quickly. It can close on its own and she may need meds . Join or fb a mended little hearts group. They are wonderful
Celeste says
Emily – As I’ve said before, so much of your story sounds like mine. Justin had ASD, VSD, pulmonary sling and tracheostenosis. All of those were worked on during his open heart surgery – he made history at Riley Children’s Hosp bc at that time all of this had never been done on a less than a week old, less than 5lb newborn. It was an all night, painstaking surgery with two pediatric cardiologists. The surgery was a success, but the beginning of the end for Justin.
Bonnie says
Thank you so much for sharing your story. My daughter had a VSD and ASD and PDA, found on her 1st well baby check up. They repaired the ASD when she was 3 years old and she is now 26 with 2 children of her own. God Bless you and your family.