"If you are like us, Johnny & I had never even heard of, much less SEEN a baby with an omphalocele UNTIL the moment our sweet Brandon Aaron was born! So I thought I would share a little bit of what I've learned about & what we have experienced specifically with our miracle "O" baby with whoever may be interested.
First off, an omphalocele is a defect that occurs when the abdominal wall doesn't close all the way. It occurs in 1 out of every 5,000 births. The survival rate for omphalocele babies in general is 70%....but 9 times out of 10 they usually have either heart or brain defects as well. Basically some or ALL of several organs form in the wrong spot - outside the abdominal wall, lots of times causing other organs to be misplaced or not properly sized as well. Brandon's "O" was medium-sized & contained some of his small & large intestines, liver & a small portion of his heart. Because of the way his omphalacele was formed - in addition - his diaphragm had 2 holes in it, one of his kidneys sat WAY higher than the other (but still functioned properly), his lungs were pushed way up & were much smaller than normal & his heart sat lower than it should have been (so low that part of it was in his "O"). PLUS he had 5 congenital heart defects making him a partial "Pentalogy of Cantrell" baby. THIS is why he was nothing short of our little MIRACLE from the very start!!
Typically the only daily care for an "O" is the paint & wait method - which is basically putting a cream (same cream used with burn victims to promote skin growth) all over his belly, putting a non-stick bandage on it & wrap it around with some gauze for months until the skin is completely closed. The amazing general surgery team at ACH taught us how to do this daily when he was 1 week old & we were happy to do it every day for the rest of his life. The future plan was to have essentially a hernia surgery to put everything back in & close up his abdominal wall around 4 years old. His omphalocele completely AMAZED the ACH team by how FAST his skin grew!!...
We ended up having an 8-week DNA study done on our sweet boy to see if he had any chromosomal issues that led to his omphalocele & CHDs. The results showed that his DNA was completely normal....but it was just by some fluke that his abdominal wall didn't close completely when he was being formed, most likely between weeks 4 & 5 of pregnancy.
Our "O" baby was EXTRA special from the beginning, completely changed us, taught us SO much, made us SO proud, overcame a TON, was our warrior & truly our MIRACLE!!
Thank you Lord for our sweet "O" baby!! We celebrate him today....& every day!!"
I had the incredible privilege of responding to a Now I Lay Me Down to Sleep request for this family when it was time for Brandon to go home. Long story short, we struck up a friendship and I was so incredibly excited to see the announcement that Brandon was getting a little sister! I knew we HAD to get some gorgeous maternity photos that would honor this new sweet babe while also remembering big brother.
It was wonderful to see Brittany and Johnny again under happier circumstances and we are all so happy with the results!
I love it when dad gets into the action and is able to be a little silly too! Thank you guys again for trusting me with your precious memories <3
