MICHAEL

Hi. My name is Deanna  and I have a 13yr old son who underwent surgery for craniosynostosis when he was 7 mos old. I would like to share his story.

My pregnancy with my son, Michael, was uncomplicated until a few weeks prior to his birth. I started spotting and two weeks before I gave birth, I was laid off work due to high blood pressure. I went into Labor on March 16, 1988 at 12:40 a.m. and gave birth to Michael Devin at 2:42p.m. the same day.

The delivery of Michael was scary. I had an epidural, however they let it wear off so I could push the baby down further into the birth canal. Right before the actual birth, I was able to have relief from the epidural. Which was a good thing because Michael was stuck. Literally. His head was out, but his shoulders would not come. There was no way he could be delivered c-section since his head was already out. They ended up having to "fold" him (which usually breaks the collar bone) to get him out. I hemorrhaged and passed out. I did not get to see Michael until the next day. To me, he was the most beautiful child in the world. Several people made comments about his head being football shaped, but figured it was because of the traumatic birth and that it would round out as time went by.

Michael had a very good pediatrician. By his 2 month check-up, she mentioned that she wanted to monitor the shape of his head, that the size was lower than average especially compared to the rest of his body which was way above average. When Michael was 6 months old she ordered head x-rays. Not a catscan...just regular old x-rays. Afterwards she said that she wanted to monitor the situation still, but thought everything was ok for now. We had already made an appt. with a neurologist "just in-case" and she said to go ahead and keep the appt. so at least we would have a second opinion.

I was alone the day I brought Michael to see the neurosurgeon. We walked in the door, and without even looking at the x-ray he asked "when do you want to schedule the surgery?"

Michael was diagnosed with Trigonocephaly with premature closure of the metopic suture and was set up for a strip craniectomy with almost total removal of the frontal bones bilaterally in order to allow normal growth of the frontal area.

Michael underwent a bi-frontal craniectomy on October 7, 1988, 9 days before his 7month birthday. He was sedated, the frontal scalp was shaved (ie: his first haircut), and a bicornal incision was then made (ear to ear). The scalp flap was turned down and the dura was stripped from the edge of the bone and a craniectomy was performed removing all the prefontal bone bilaterlally except for two small bone islands approx 2x3cm each. All of the metopic ridge was removed.

When Michael came out of surgery, I wanted to die. Swelling had already started and he had a "crown" of bandages on his head. They would give him nothing for the pain except tylenol. I was told at one point, "it's ok, he won't ever remember this." It made me so mad because I didnt care if he remembered or not, I knew that at that point he was in pain NOW.

Michael slept under an oxygen tent for the first two days. Surgery was on Friday and he was released on Monday a.m.

Michael had his sutures removed one week after his surgery. In December, 2 months after the surgery, he had filled in at least 80percent of the defect that he had..the bone was growing back very quickly, and the doctor said he wanted him back in a month to have xrays to see if he needed to be reopened. One month later, the xrays showed that his craniectomy was almost completely filled. However, he did not have the anterior ridge. He was released from the neurosurgeons care after he said "this is probably about as good as one could get it surgically."

In May 1989, 7 months after his surgery, we returned to the neurosurgeon because we wanted him reassessed. The surgeon did not see anything wrong. We told him that his right eye didnt seem "right". He said that he didn't see anything wrong, and could not tell us much about his right eye.

We scheduled an appt with another surgeon at a different hospital for a second opinion. In the meantime, the original surgeon called me at work approx. 1 week after our last appt. wanting us to go to the Children's Hospital in Houston TX (he was going to pay for us to go), admitting he did not do the correct procedure on Michael!

We did not go to the Children's Hospital. We kept the appt. with the second surgeon who did many catscans on Michael and watched him closely over the next two years.

Michael had no developmental delays, physically or otherwise. He cannot see out of his right eye, he has 20/200 vision and can only be corrected to 20/60 with corrective lenses.

Michael is a very healthy, EXTREMELY intelligent, young man. He is now 13. He has a hard time wearing his hair cuts because of the scar from ear to ear. When he sweats, his hair parts where the scar is. Kids are cruel and they have made fun of him on numerous occasions. We try to be supportive as possible, but there really isn't a thing we can do to take away the hurt that he goes thru.

He does play sports: football and basketball.

Here are some pics of him as a baby and now:

Michael  at 8 weeks of age	Michael at 3 months of age
Michael at 11 1/2 years old