Appointments

Last Friday we went and had a couple appointments to try to figure out more what's going on with Baby B.

We first went to Primary Children's and got a fetal echo-cardiogram done on both their hearts. Baby A looks normal, her heart is functioning the way it should. However Baby B has a small hole in her heart. She has Ventricular septal defect (VSD)a hole in the wall that separates the right and left ventricles of the heart. Ventricular septal defect is one of the most common congenital heart defects. The baby may have no symptoms, and the hole can eventually close as the wall continues to grow after birth. If the hole is large, too much blood will be pumped to the lungs, leading to heart failure. So once she is born within an hour or two they will take her to get an echo-cardiogram done to see if the hole is the same size or if it is smaller than it is now. The Cardiologist said if it wasn't all the way closed they would need to do surgery between 6-12 months of life.

Afterwards we rushed over to the University of Utah Hospital where we got a fetal MRI done on the babies. I must say I hate being crammed into that little machine to get a MRI, it makes me feel so claustrophobic. Luckily it only took about 30 minutes and it gives us more information on Baby B, so it was way worth my fear.

Unfortunately the information we received from the test wasn't what we wanted to hear. As far as her Congenital Diaphragmatic Hernia (CDH) is concerned she has the kind of hernia you don't want. It's on her left side and her liver is up where her heart should be along with her stomach. Babies who have the liver up above the hernia have a lower life expectancy.

She also has what's called Omphalocele. Its where the muscles in the abdominal wall do not close properly. As a result, the intestine remains outside the umbilical cord. So basically her intestines, liver and possibly other organs are on the outside of her body held in a sac.

And to top it off she also has Cloacal Extrophy. This is very rare, it only happens 1 in every 500,000 births. The doctor said she's only seen about 4-5 cases in the 25 years that she's been a doctor and she's never seen a baby that has both Cloacal Extrophy and CDH. Cloacal Extrophy is where the bladder/vagina/rectum don't form normally. And that's why they were unsure if her bladder was on the outside of her body because hers haven't split the way it should. There is a high association with other birth defects when a baby has Cloacal Extrophy, especially spina bifida, which occurs in up to 75 percent of cases. And we know she has that as well.

So as of right now the doctor said she had a pretty good chance of making it till delivery. We meet up with our Perinatologist on the 26th and we will talk to him about meeting up with a Pediatric Surgeon to get their opinion to hear what our options are if any. The doctor let me know it's highly likely she won't be able to survive once she's delivered with the combination of problems she has.

I feel like I had a sliver of hope up until I heard all this information. It really is hard to explain to anyone just how I feel. I know of families who have lost their babies early on and felt compassion for them and thought how hard it must be. But to be experiencing it myself, well it is a lot worse than I ever imagined. So many emotions all at once. I feel scared for both babies, hopeful that Baby A will make it, sad, sick to my stomach, terrified for the day to come, helpless, angry and so much more. Part of me can't wait until delivery so that I can see my two precious angels but at the same time I am so sad to know I will probably have to say goodbye to one of them. Hopefully during the next 6 weeks I can figure a way to accept whats going to happen either way. I'm still hoping for a miracle but we are ready to do whats best for our sick little baby, even if that's saying goodbye so she doesn't' have to suffer.