Surgery for Belle

It's been confirmed. Our little Belle is going to need surgery.

When she was born she had some swelling in her head that they believed was due to the vacuum and forceps that had to be used to get her out during delivery, but they wanted to keep an eye on it just in case. So when she was two days old, our pediatrician, Dr. Mumford, came by to meet us and check on Belle. When he looked at her skull he felt along the back and the top and was concerned by some raised sutures. He said that may have been because of some prematurely closed spots on her skull. 

This was starting to sound horribly familiar, so I asked "Is it Craniosynostosis?"

Dr. Mumford looked surprised that I knew the term, so I told him Stephen had had it when he was a baby. 

Craniosynostosis is when one or more of the sutures in an infant's skull fuses to bone prematurely, leaving their skull with an odd shape and the brain with no room to grow or develop. Stephen had surgery for his when he was nine months old and has metal plates in his head and a long scar that goes ear to ear around his head from the surgery. Overall, his seemed very intense.

Dr. Mumford said that he wanted to keep an eye on it and that if the raised suture didn't go down in swelling we would need to see a specialist to go over our options, so at that point all we could do was wait. I called Stephen (who had gone home to take a shower and had just barely missed the pediatrician) and explained what the doctor had told me and he came back to the hospital minutes later. 

We were both pretty worried and spent the day in a fair state of emotional wreckage, but that night Stephen gave her her first father's blessing and we knew everything would be alright.

The sutures didn't end up going down so at Belle's checkup after we were discharged they set us up with a specialist at Primary Children's Hospital in Salt Lake. Naturally we couldn't see him right away so we had to wait about a week to know for sure what would need to be done about her head. 

It was agonizing.

Finally the day came and we left bright and early to go see Dr. Siddiqi. We had read and heard great things, he is the Chief Pediatric Cranio/Facial Surgeon at Primary Children's, one of the best pediatric hospitals in the country, so we were very happy with that. We got there and checked in at the clinic for the consultation, a process that took way too long. I had a bit of a difficult time getting a rather inept secretary to understand the concept of Medicaid, but eventually we got back to the exam room. Finally we were about to see the doctor!

Then a receptionist came in and told us they didn't take our insurance.

She went on to explain that they take Medicaid at the hospital itself, but not at the clinic, and we would have to reschedule an appointment to see Dr. Siddiqi at the hospital for next week.

I think I almost had an aneurism right then and there.

As we were getting ready to leave, the Doctor walked in and said "Insurance trouble?". We let him know the situation and, possibly knowing how worried we were, said he'd go ahead with the consultation "off the books". 

We really like our surgeon!

After a quick exam he was able to tell us that Belle has the most common type of craniosynostosis, in which the sagittal suture is fused (this is about 55% of synostosis cases). Since she has only one fused suture its referred to as "Simple Synostosis". Stephen's metopic suture was closed (which only affects about 5-15% of cases) and he didn't have a soft spot making it a "Complex Synostosis". She will be in surgery for an hour and a half and will only have to stay in the hospital for two days with no time in Infant ICU.

He explained that Belle will need surgery at around 2 months old. They will make two simple incisions and remove a section of the bone where the suture should be. This will basically give her one large soft spot and she will need to wear an infant helmet for six months to get her skull properly shaped. The best part of it all is how low risk the surgery is. The surgery has been refined and perfected since Stephen had it almost twenty five years ago and we feel very blessed to be close to such a good hospital and have such an experienced surgeon.

Belle is already proving to be a little trooper and will be just fine with a little recovery time!