We met today with Dr. Thomas Black, the pediatric surgeon at Cooks that will be taking care of our girl once she’s born. We really liked him and feel confident that he knows what he is doing and will take good care of our girl. He has been a pediatric surgeon for nearly 30 years and has taken care of “a few dozen” omphalocele cases. He took his time with us, answered all our questions (and y’all know I had PAGES of them) and never made us feel as if our questions/concerns were silly or invalid. Oh, and he introduced himself as “Tom Black” not “DR. Black” which we thought was pretty cool. AND he asked us right away if we knew what we were having because he did not want to refer to our baby as “it”. This REALLY impressed us because it showed that he was already thinking of her as a person. I don’t know…I can’t really explain it but it was these last two little things that made us feel certain that we were with the right doctor.
Now, for the good stuff…
The baby’s omphalocele is “small to moderate” sized and contains mostly small and large intestine/bowel loops. The liver is still contained in her abdomen! This is GREAT news because this is a much smaller omphalocele and much easier to repair. It is much more difficult to repair if the liver is involved. So PRAISE GOD for that!!
He will repair the omphalocele in one of two ways: If it is small enough, he will repair it with one surgery in which he “pushes” the organs back in and stitches the muscles together over it and then closes the skin. If the organs are too large to repair that way, then he will repair it over a few days by reducing the organs into the body a little every day. This way there isn’t too much pressure being put on the organs or her lungs by trying to “squish” everything in there.
We asked him whether more organs could be pushed out as she grows and he said no. So thank God, again! We don’t expect to see any changes for the worse.
The baby’s abdomen size is measuring on track with the rest of her body. This is also good news because it reinforces that most of her organs are still in her body. If they weren’t, we wouldn’t expect to see her body growing as well as it is (since the growing organs are what push the abdomen to grow).
Dr. Black is 80% sure that he will able to repair the omphalocele with no problems, if there are no underlying conditions or problems. He told us that in almost 60% of cases of omphaloceles, there are other conditions that complicate the surgery. They mostly see problems with the heart, lungs, spine, brain and other organs that can make it hard, and in some cases impossible, to operate. Sometimes there are also chromosomal conditions, such as Trisomy 13, 18 and 21, which make the repair much more difficult.
Trisomy 13 and Trisomy 18 are considered “incompatible with life” and most children either do not survive in the womb or die shortly after they are born. The ultrasound, however, showed that all of her other organs looked normal and the perinatologist noted that he didn’t see any other signs of chromosomal abnormalities. The only way to know for sure though is to have an amniocentesis. I don’t think that we are going to do an amnio because (1) it carries its own risk of losing the baby and (2) it won’t change anything. We are choosing to leave this in God’s hands and pray that she is a chromosomally-normal, and otherwise HEALTHY little girl.
Dr. Black is optimistic that she IS but he, of course, has to give us all the information.
The one test that we will likely do is a fetal echocardiogram to make sure her heart is absolutely healthy. Since heart problems are the most common problem they see with “O” babies, we want to know that her heart is healthy before she heads into surgery.
Dr. Black also told us that a small omphalocele is not as much of an emergency situation as we originally thought. Because the organs are contained in a sac, and therefore protected, they do not need to be put back right away. This is good news because it will give the neonatologists time to look her over, check out her other organs and do blood work to rule out any other underlying genetic or chromosomal disorders and make sure she is healthy enough to undergo anesthesia and surgery.
So here is what will happen when she is born…
I will have a scheduled c-section delivery at Harris Methodist in Fort Worth . Again, we are going to try to get me as close to term as possible so she will be as healthy as possible. As soon as she’s born, the neonatologists will assess her as they do any newborn and take care of any problems, if any, that need immediate attention. She will then be taken to the neonatal intensive care unit. Harris Methodist and Cook Children’s Hospital are connected so we’re not sure whether she’ll initially be in Harris’s NICU or Cook’s NICU (both are high level NICUs). The neonatologists will check her other organs – heart, brain, liver, spleen, etc. – for signs of swelling (another common problem) or other problems. If all that is normal, she will be cleared for surgery. Dr. Black will then assess her and decide whether he can repair her all in one surgery or whether he will need to do it over a period of a few days.
Which ever he decides will determine how much time she spends in the NICU.
He did tell us that he feels certain he will be able to repair it with surgery, that she’ll be able to eat the next day and will be able to go home soon after.
Finally, Dr. Black will try his best to give her a belly button!!! I know this sounds like a strange and maybe even “cosmetic” concern to have, given the potential problems she may be facing but…I’m a girl. And I was once a thirteen-year old girl. That wanted to wear a bikini.
When we asked about whether he would try to give her a belly button, Dr. Black jokingly asked us, “You’re not going to let her wear a bikini, are you?”
And I said, “No. But that is a fight that I’m looking forward to having with her.”
You see, I’m not going to let her wear a bikini.
But I want her to WANT to wear a bikini.
Thanks again so much for all the thoughts and prayers! I can’t believe the support we’ve received…well, wait. Yes I can! But your calls and emails and cards have touched our hearts more than you’ll know. We feel comforted by them and we feel God’s peace. Know that he’s already answering all our prayers…the omphalocele is small! He led us to a surgeon that has seen “a few dozen” cases and is skilled at treating them. And so far, all signs point to her not having any other underlying problems or disorders.
Please keep the prayers coming! Again, we’re praying to get to term before delivering her. We’re praying that the fetal echocardiogram will show that her heart is normal and healthy. We’re praying that her umbilical cord stays free from knots or kinks. And we’re praying that the weekly ultrasounds and tests I will be receiving will show that she is continuing to grow and thrive.
Thanks again. We love y’all.
Randy, Alicia, Sam and Baby Girl
P.S. Most of you know of the “struggle” we’ve had to find the perfect name for our girl. Well, we think we’ve finally found THE one. It’s one we’ve had on our list since I was pregnant with Sam but had pretty much crossed off for this baby. But now…we think it’s perfect.
Zoey
It means “life”.
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