The Resolution

Why does the air feel so wet?! We really underestimated the humidity in Dallas in April. Arizona has us so unused to humidity. Claire did great on the flight. She slept the whole way and everyone complimented us on what a good baby she was. I am sure they were pleasantly surprised since she was squawking quite loudly while we waited in the terminal!

We went to breakfast this morning and when we got back I had a message on my phone from Dr. Dallas's office. They said his morning surgery was cancelled and he had asked if we would come early if possible. We quick got ready and left ten minutes later. Unfortunately, I didn't have time to get my questions together or have anything with that I could take notes on but it probably wasn't needed.

Dr. Dallas was very pleasant and spent a lot of time with us. He said he wanted to pretend that we hadn't seen any other doctors about this so he would just explain things as though we didn't know anything to avoid glossing over anything.

He started by asking us to tell us the story so far. I started by telling him about the pediatrician sending us to Dr. Mesa. He asked who it was and said, "Yes, I know him." I then told him that although I had no concrete reason, I did not feel comfortable with him. Dr. Dallas replied, "That's not surprising." So big score for my mommy intuition! Then I told him about Dr. Phoenix and our experience with him.

Then Dr. Dallas launched into his assessment and opinions. First, he agrees that Claire's case is not cut and dry. There is no easy yes or no answer. He said that the two major reasons for surgery are cosmetic, to make children look and feel "normal", and to make sure that the brain is getting nourished and growing as it should. (If there is too much pressure, due to too little room, the blood vessels may not be feeding the brain appropriately. And then there are the other problems caused by pressure.) He, like the other doctors, feels that Claire's case is not a concern from a cosmetic perspective. He also believes that her ridge will become less noticeable over time.

Dr. Dallas also doesn't see anything that tells him that there is anything concerning going on with her skull or brain right now. He feels that the other sutures of her skull are compensating for the suture in the front that is closed. There is no evidence of elevated pressure in her skull. He was not concerned about the lack of fluid in front of her brain. He said that he and his neurosurgeons don't think that is a problem (in general, not just with regard to Claire).

Most important to him was that she is meeting all of her developmental milestones. He repeated that he thinks she is a normal child and will continue to be a completely normal child. He is not concerned about the size of her head, but could not explain why her head is so small. He just thinks she has a small head and as long as it continues to grow it will be fine. Again, he would only be concerned about that if she was having delays.

Dr. Dallas would personally recommend a wait-and-see approach. He even said that's what he would do if it were his child. He also felt that the best time to operate on a case like hers would be later, at around 18 months, because the skull can tend to go back towards the way it was and the older the child the less likely that is to happen. He does not think she will have problems in the future but admits that it is definitely possible. He is happy to review pictures and progress by email or in person to help us be sure everything is fine. He acknowledged that we will attribute any problem or weird behavior or whatever to her condition, but we probably would with or without surgery. That is just something we will have to learn to live with and be at peace with.

We also addressed another of my concerns, the medical literature on development and craniosynostosis. I told him I had read a bunch of studies that pointed to problems, even though they didn't have the best methods and acknowledged their own flaws. He dismissed them all with a wave of his hand and said, "Those are all terrible studies." He said he only respects the research of one person. That researcher believed she would find a link between craniosynostosis and delays but has now published three studies following the same patients in infancy, at age 3, and at age 7, all showing no difference between "normal" children and those having craniosynostosis.

Dr. Dallas said there were three doctors in the Phoenix area that he would recommend if we wanted to go that route. Dr. Phoenix was second on the list. He also said he understands why Dr. Phoenix said he would lean towards surgery and we discussed how Dr. Phoenix also said there was no problem with waiting to make our decision. I mentioned how Dr. Phoenix had done a fellowship with the Dallas clinic and Dr. Dallas laughed and said something that Kyle and I interpreted very differently. He said, "Dr. Phoenix is good in spite of his fellowship here, not because of it." I took that to be a compliment to Dr. Phoenix but Kyle took it as a jab at him. Hmm, at least he is on Dr. Dallas's short list, which he said he would disavow all knowledge of.

Before we came here we hoped one of two things would happen. Either Dr. Dallas would tell us that Claire needed surgery and then we would feel it was really needed and justified, or he would give us good and compelling reasons why she did not. We just wanted to be able to feel comfortable with our decision. Before we came we did not really want her to have surgery (who does), but we thought it was necessary and we were scared not to have the surgery and what could happen. Now we are not afraid anymore to not have surgery. We feel comfortable to forgo it for now, and see what happens as she grows. There were times when we wondered whether going to Dallas was necessary but now we are very glad we came. We feel much better. As Dr. Dallas pointed out, he does this every day and he is one of the busiest doctors with these types of procedures. In other words, he is truly an expert in this field.

We want to thank you all again for following Claire's story and for thinking of us, praying for us, meditating for us, or whatever it is that you do. We know many people were praying that we would find clarity after this appointment and we both feel that we did, so thank you. We are happy that she does not need to have surgery but Dr. Dallas is right that we will always wonder and worry about her condition and her development. We will just have to pay attention and hope for the best.

Thank you again from Kyle, Claire, and me!