Dr. R. Jarrahy, M.D. (Craniofacial Surgeon)
Dr. Lazareff (Pediatric Neurosurgeon)
Care would be at Mattel Children's Hospital UCLA
Most of the answers were from the craniofacial surgeon. If an answer was from the neurosurgeon, I’ve noted it with (NS).
Diagnosis & Recommended Treatment
- What type of Craniosynostosis? Metopic. All other sutures are open (x-ray). Anterior fontanelle is still open. Very prominent ridge. Hypotelorism.
- Would you consider it mild, moderate or severe? Between moderate and severe. This is based on the amount of ridging that he has and based on the overall shape of the skull. It’s not just a ridge. He has a true keel shape to the forehead.
- Will you do a CT to confirm the diagnosis? CT will be used for aiding in surgery.
- What type of procedure are you recommending? (Endo, CVR, FOA, Strip) Can you describe the procedure? He’s too old for endoscopic surgery and even if he had presented at an earlier age, he’d be on the cuff in terms of results. This is because he’s moderate to severe. The best candidates for endo are mild presentations early on. The reason for this is if you remove the fused bone and then put him in a helmet, you are expecting the growth of the brain during the first year of life to give you the final result. He’ll be 6 months by the time he goes to the OR, so he’s lost 4 months of growth. He would have a CVR/LOA.
- What is the best time (or age) to perform the surgery that has been recommended? How long can the operation be safely delayed, and what problems can happen if we delay? 6-9 Months, 6-7 Months (NS).
- What are the possible risks/complications if we choose not to have the surgery? Cognitive delays, psychological issues due to looking different and being picked on. I think if you went to 10 surgeons, you’d get 10 that recommend surgery.
- What number can I call if I leave your office now and have more questions? They gave me a business card with phone numbers.
- How many cranio surgeries do you do in a week/year? 10 surgeries a week, craniosynostosis cases are about one every other week. The number isn’t what determines if you are good or not. Beethoven only wrote 9 symphonies. It’s also the dynamics of the Operating Room at UCLA. Everything works like a beehive (NS).
- Will Jesse be in intensive care? Yes
- How do you join the skull back together? Do you use plates and screws, or sutures? Resorbable plates and screws that take about a year, year and a half, sometimes two years to go away. Some people have reported issues with infection… I’ve never had a problem with those.
- What are the possible risks/complications of the surgery?
- Can we donate blood for a direct transfusion? Yes.
- Will students, interns, residents and fellows be looking after my child? Can you define their roles in my child’s care? Yes, fellows, residents and some international surgeons. There will be a lot of people involved in his care. Probably upwards of 30.
- Blood donation: Asked about donating blood for him and whether this would mean that if he needed an organ from me later, I wouldn’t be able to give it to him, and he had never heard anything about that. He said they do offer it, but you’d need to bring that up with the blood bank.
- Will it be a straight line or a zig-zag? Zig-zag.
- Is the anesthesiologist a specialist in infants? Yes, pediatric anesthesiologist. Several on staff.
- Will both the NS and CFS be there during the surgery? Yes. We’ve never had a case where one or the other didn’t show up. We don’t operate like that.
- What type of pain management will Jesse have? IV narcotics normally used the first 24 hours after surgery, then oral narcotics such as Tylenol with Codeine. They do very well because they don’t have the emotional pain that older kids and even adults do.
- Do you use drains? Why or why not? Yes for about 48 hours, to help with swelling and reduce fluid build-up.
Dr. Jarrahy was very calm and patient. He acknowledged that I had done a lot of research prior to meeting him, so started by asking me to ask him questions since I had already researched a lot about craniosynostosis. So I went through most of the questions I had. I did like him, but I didn’t get those warm fuzzies. He is the first surgeon that I’ve seen, so I can’t make any decisions yet.
Meeting with the Neurosurgeon
Dr. Lazreff was a funny guy and got straight to the point. As soon as he walked in the room, he said, “Surgical procedure has to be done. The best advice as a father of older children, much older, do it. Kids are very cruel. It’s reasonable to presume that the pushing of the forehead may have some consequences related to development. It’s not good.”
We started to talk about the role of the surgeons and he said that if Jesse has a girlfriend, or boyfriend (they are both normal as far as he is concerned), later in life, then it won’t be because of him or because of me, but because of the craniofacial surgeon.
Dr. Lazreff went on to say that his job today is to introduce himself and insist that I have a normal child that has an unusual, not abnormal, skull shape. He also explained that the brain will grow 4 times it’s volume and that unusual shape will get worse. Surgery is required because children are cruel and to remove pressure on the brain which may cause cognitive delays He explained that there is really no way to prove it because if you have 15 patients, you aren’t going to not operate on one just so you can see what if their cognitive function is affected when they get older.
I asked him about how many surgeries they’ve done and he made the comment about Beethoven only writing 9 symphonies. Smart guy. He also talked about how UCLA isn’t a private practice. They only hire the best and talked about how it’s the same with Delta. He assumes that every pilot that works for Delta is good and he never asks who the pilot is because they are all good. From the OR nurse to the person that cleans the OR, to the recovery room nurses… he says they are all good. Ok, well, a pilot that works for Delta isn’t cracking my son’s skull open either. Not feeling that analogy at all.
He assured me that I will suffer much more than Jesse will. Jesse will come out with a bandage and sometimes the eyes are swollen. The Dr. said that it’s not that the eyes are closed, but because the eyelids are so heavy that it forces the eyelids down. He went on to explain that I’ll be asked to sign a consent for all the horrors but that none will happen.
As far as when the surgery should be done, he said 6-7 Months. He explained that at this time his bone is very malleable and the longer they wait, the thicker the bone gets. He said the surgery should be done in August or September, but no later.
How I’m Doing
Not so good. I can’t be in denial any longer. I can’t look at Jesse and think, “It’s not that bad. I’m wrong. He won’t need surgery.” I would have gladly walked away with my tail between my legs and be forever known as the girl who cried wolf if they would have told me that I was wrong. I would rather go through that than have my son go through this. I wish I could have the surgery instead of him.
How Jesse is Doing
Jesse is his normal, smiling, happy self. He’s such a joy. Every morning when he wakes up, he does it with a smile on his face. I’m so lucky to get to see that every day. He’s playing with his feet constantly now. It’s making it hard to change his diaper, or get him to bed for that matter. He’s infatuated with his feet! I’m so thankful that he doesn’t know what’s happening and doesn’t have to feel that anxiety leading up to the surgery. I’m grateful that he won’t remember any of this. And one day he’ll probably think it’s cool to have a great big scar to brag about amongst his friends. Boys love that kind of stuff, right?
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