Information Overload – Part 2

After our high risk OG GYN appointment and a nice lunch and shopping trip at the mall nearby, we went to the children’s hospital for our surgical consult. Dr. Eccles came and met with us. She was all business, which I like. She came right in the consult room and just started talking.

When baby is born, we will be assigned a surgeon – whichever one is on call the day baby moves out of her baby house will be our doctor for the duration of her care. The doctor will be there when she is born, and they will determine what, if anything, they need to do. As I mentioned yesterday, the surgical team is going to put a lot of pressure on the OB GYN to deliver baby with her sac in tact. If the sac is in tact, but is too big to fix right away, there is nothing for the surgeon to do. The nurse will put gauze and saline on it and wrap it up. If the sac has ruptured, the surgeon will either have to sew up the sac or put a “giant condom” over the contents. Well Dr. Eccles had a surgical name for it but I forget what it is now. I just remember that she said it looks like a giant condom. This thing needs to be sewed right to baby’s abdomen. This brings up an interesting issue that we need to think about for the next little while – do we want to have a classical (up/down) c-section or the new style (side to side)? The classical method is the best method to protect the omph, but has a higher risk of compromising the uterus so that future pregnancies would be a risk. The second method is much safer for the uterus, but poses a higher risk for damaging the omph.

Dr. Eccles mentioned that our baby has a giant omphalocele, but it is not the biggest she has ever seen. The omphalocele sits higher up, not centred around the belly button. There is liver in the omph, and she said it is inevitable that there is bowel in there as well. During the time when a baby’s intestinal organs go back into the tummy and the abdomen seals up, baby’s abdomen didn’t seal up, and the organs didn’t float back to where they should be inside the abdominal cavity – they just kind of went in willy nilly. Then the blood vessels grow to all the organs where they are, and kind of glue them in place. This means that when they fix the omphalocele, the surgeons will just put the organs back into the abdominal cavity straight in. There isn’t really any way to rearrange the organs and put them where they belong because it might kink up the blood vessels and then blood can’t get to the organs. In our case, that means baby’s liver will never be tucked to the right side under her ribs. It will sit right in the middle of her abdomen. Our baby’s heart is also shifted to the right. Basically her insides are chaos. Just like my office.

Fixing the omphalocele will depend on the size of the omph and the size of her abdomen. At birth, there physically may not be room to put the contents of the omph back into the abdomen. But as baby grows bigger, the omph stays the same size and it will be easier to get all the contents back into the abdomen. This waiting can be done as an outpatient if there are no other complications. Depending on how much skin and how much fascia there is, a mesh gortex mesh may need to be used to cover the hole. Also, depending on how much liver is in the omphalocele, and the shape of the hole, they may need to “remodel” the liver (change its shape) so it can fit back into the hole. basically, giant omphaloceles are different in every case, and the surgeons will have to see after birth what is the best path forward. Once they patch her up she will have a scar going up and down her tummy. There will be no belly button. Dr. Eccles probably will not put one in until baby is about 10 years old and really wants one because scars will move on growing kids and Dr. Eccles doesn’t want our baby to have a belly button on some random spot on her belly.

The big concern at birth will be whether or not baby’s breathing function is normal. Babies with omphaloceles can sometimes have trouble breathing because their abdomens were not developed properly. If baby has trouble breathing then she will be put on a ventilator. The amount of time baby needs to be on the ventilator will depend on how quickly her breathing can get back to normal. In Dr. Eccles’ worst case scenario, she had a patient who was on a ventilator at night until he was 5 years old. This meant he had to go home with it, and a full time night nurse was hired to monitor him at night. I am hoping that baby will be good at breathing.

If anything is required for the heart, the heart surgical team will take the lead and the omphalocele will take a back seat. This means if something needs to be fixed right away with the heart, they will not attempt to fix the omphalocele. With the omphalocele where it is, if heart surgery is needed, the drains locations will need to be reviewed, but that’s not too complicated.

She was not able to tell us what our hospital stay is going to look like. This is because it depends on far too many factors. The best case scenario is that there is enough skin and fascia to fix the omphalocele at birth, and that there are no breathing or heart problems. She is pretty sure this is not us because of the size of the omph. More likely as long as the omph doesn’t rupture at birth, we will be a candidate for being an outpatient while we remodel the liver and allow the abdomen to grow. However, if there are other complications, especially a breathing one, our stay at the hospital can be much longer.

Once we are discharged by the hospital, we will be followed by the surgical team and also a paediatrician. There will be regular visits with the surgical team to see how the scar is healing up, and whether or not any follow up appointments are needed. Life for little baby will be fairly normal. She will be discouraged from playing contact sports because her liver is not protected by her ribs. She will also have a higher risk of bowel obstructions based on the fact that the bowels are just in the abdomen all willy nilly. If there are any issues in the future (gall stones, appendix issues, obstructed bowel), the surgery will be more complicated because they will have to go in there and actually find the organ since it won’t be in the normal place.

I think I’ve covered everything. Yesterday’s appointments were a lot of information, some of it quite overwhelming. But overall, I feel better just having the information on hand. My hope is that baby will grow big and strong in her baby house so that she will have the least amount of complications.


3 thoughts on “Information Overload – Part 2”

  1. We have just finished reading Part 1 and Part 2. We missed these posts yesterday because we were away at the weekend without wifi. It is quite overwhelming really. However your attitude is totally constructive and ‘can do this’ Jess, and we are inspired by it. Both Addison and new baby are very very blessed to have such great parents.


  2. That’s a very thorough overview of what may be up ahead for you. Hoping and praying that it doesn’t come to this, but confident that you two will back each other and deal with it – come what may!
    Have a great time over Halloween 😊


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