CAPPS CranioKids Mariah

My husband and I were blessed with two healthy beautiful boys. Almost five years after our 2nd son was born, we were blessed again- with a girl! We named her Mariah Jean. She was born on Good Friday, April 13th, 2001 at 11:57 am, ten days early from our due date. She weighed 6 pounds 5 ounces and 19 1/4 inches long. She was beautiful!!

I think it was the day after she was born I noticed a flat spot over her right eye. At her two week and 2 month check ups I asked one of her doctors about it.( we go to a family clinic where there are two out of I think 7 or 8 doctors that we see) He said more than likely it was 'molding' from childbirth and not to worry, that it would come out of it.

Every night, after I would take my beautiful baby girl out of the tub, I would play with her in front of the mirror. Something about her seemed 'off' but I always thought it must be the flat spot that I was seeing. Later I found out that the flat spot wasn't the only thing wrong. When Mariah was three in a half months old I was playing with her in front of a mirror at a store and it hit me!!- Her ears were not placed in the same place on each side of her head. Her right ear was pushed forward. I instantly started shaking, wondering what in the world could be wrong with my daughter. I got my three children to the van, and after getting behind the wheel, I started sobbing. I don't know how I got home, but as soon as i did, I got on the phone and made an appointment with the other doctor (of the two we see) for the next day.

When my husband got home from work that night, he looked at her and thought I was nuts. I then had him put her in front of a mirror- and then he noticed it too. I took Mariah the next day to the doctor. He took a look at her while she was sitting on my lap and said that he could see that her head was asymmetric. He then asked me to give him a rattle and moved it side to side to see if she would follow it. She would to the right but not to the left. He said that the reason was due to a condition called Torticollis in the neck. I'm now thinking- what does this have to do with her funny shaped head?! He made an appointment for Mariah to start seeing a physical therapist for the Torticollis and suggested to have a cat scan to be done on her head to make sure everything inside her head looked okay. By this time, I'm starting to get really scared but kinda feel better also that he was being thorough.

I went home thinking why me? why my daughter?!? This couldn't be happening, not to me anyway. My husband and I went to the hospital for her catscan a couple of days later. I couldn't wait three days for the results so I called that afternoon and asked if they could get them any sooner. The next morning I called our doctor's office again to check if they had gotten them back yet- they had. Talking with Mariah's doctor, he explained to me that the cat scan showed that her brain looked normal. I let out a huge sigh! And then he says BUT- "She has what appears to be a premature fused suture in her skull." WHAT?!? He explained that he wanted us to meet with a neurosurgeon to look into this condition further. I'm thinking- SURGEON? We made an appointment with a neurosurgeon in Des Moines the next week.

In the meantime, I called the clinic and asked then to give me the name of the condition they said my daughter had. They told me it was called- CRANIOSYNOSTOSIS. I then got on the internet to see if I could find more information on this condition. I linked to a website called CAPPS. It was very helpful in giving me the information I needed. It gave me specific questions to ask our neurosurgeon. It also had other mothers' stories and their children's pictures before and after surgery.

When we met with the neurosurgeon my husband and I asked tons of questions. He said that we needed to correct her condition with surgery as soon as possible and made a date for the surgery to be done in two weeks. The next morning I woke up with a feeling that something wasn't right. I called the phone number I got off the CAPPS site. Jennifer was wonderful to talk to. I explained to her that the neurosurgeon that we had seen said that Mariah didn't need a plastic surgeon- I knew otherwise after being on the CAPPS site. She thought it would probably be best that we got a second opinion and gave me the number to a Dr. Menezes in Iowa City. When I got off the phone with her I called Mariah's doctor to see if we could make an appointment with Dr. Menezes- a pediatric neurosurgeon that had more experience in this kind of thing. We got an appointment for a consult with him later that week.

Before we went to Iowa City, I got on the internet again to see if I could get more information on the Endoscopic procedure that Jennifer had mentioned to me. It was offered in Missouri, but to me, traveling the distance was not a big deal if we decided to go with that procedure rather that the cvr procedure. We took Mariah to Iowa City to meet with the neurosurgeon and I think My husband and I both felt instantly comfortable with him- like a little of the weight was taken off our shoulders. He explained to us that the surgical team did include a plastic surgeon. He said that he had been doing Cranio surgeries since 1977. On our trip back home from his office, both my husband and I felt and knew that we were going to go back to Iowa City to have her surgery done there. It just gave us comfort that he had many years of experience and on average does two or three Cranio surgeries per month.

Yes we were scared to death of the idea of a blood transfusion, four to five hours of surgery, the swelling our daughter would have to endure, but something made us lean more towards the CVR and orbital advancement surgery. But, I did call and talk to the nurse, Cathy, in Missouri. She, too, was very helpful and informative. After getting off the phone with her, I still felt that we were doing what felt right by going to Iowa City to have her surgery done there. I called Iowa City the next day and they scheduled her to have the surgery in six weeks. (At the time of her surgery, that would make Mariah 5 months old). So we wait.

Two weeks before her surgery we went to Iowa City to donate blood and for Mariah to have a 3-D catscan done. My husband was the one who matched her better so he was the one who donated. Mariah did wonderful during the 3-D catscan. They gave her an oral sedative. She woke up about five minutes after the scan and drank about two ounces of formula. She then went back to sleep and slept all the way home.

The next two weeks seemed to go by fast. Monday September 17th, 2001- we dropped our two older children off at school and told them we loved them and would be home within a week sometime. It was very difficult for me to leave my boys but I knew they would be in good hands at Grandma's and my friend Chris's house over the time we would be gone. We then took off for Iowa City to have all the pre-op appointments done. We decided since it was over a two hour drive that we should stay the night before her surgery in Iowa City. We had to be at the hospital on Tuesday (Sept 18th) for her surgery at 6:30 a.m. It wasn't until the day before her surgery that we met with her plastic surgeon. Dr. Canady was wonderful- before he left the room he looked at me and said we will take good care of your daughter. I can't tell you how that made me feel.

Okay here it goes- We got to the hospital on Tuesday Morning at about 6:20 am They took us in a room where they had us put a surgical gown and booties on Mariah. The gal asked us questions about any rashes she had, when she ate last etc. I started kinda crying at this time. I just held her, hugged her, and kissed her as much as I could. The gal then about a half hour later took us to the pre-op room where there were about six cribs. She told us to find the one that had her name on it. We waited there about an hour.

At about 7:45, Mariah fell asleep in her Daddy's arms. At 8:00 am the anesthesiologists came in to take her. I reminded them of her birthmark on the back of her neck because we forgot to mention it in the pre- op room where they asked us all the questions and also asked them to shave her head completely. I then took her from my husband's arms and gave her one last hug and kiss and then gave her to one of the anesthesiologists and turned around and cried uncontrollably in my husband's shoulder.

We were then directed to the Day of Surgery Waiting room. (We were later told that her surgery started at a little after 9am.) They told us that we would have someone from the operating room call us to keep us updated. Our Pastor traveled the two hours that morning to come sit with us during the wait of her surgery. It was wonderful talking to someone to help my husband and I keep our minds off of the surgery.

At around 10:30 am Dr. Canady let us know that Mariah's surgery was going very well. At about 11:15am we got a call from the OR nurse letting us know that they were starting to 'close' and that Dr. Menezes would be in to talk with us in about a 1/2 hour. Her surgery only took approximately 2 and a half hours!!!

At approximately 11:45 am, Dr. Menezes came to talk to us. The first thing he said was that the 3-D scan was wonderful- there were no surprises. Also he told us that she lost very, very little blood so during surgery she did not need the blood transfusion but said that before she left the hospital that she may still get it. Then approximately ten minutes after we talked with him we were directed to the recovery room.

I was scared to death what I might see. When we walked in she had both of her eyes open for about 20 seconds. Other than the fact that she had a turban on her head, and had wires hooked up to one arm, she looked like herself. We were with her for about ten minutes in recovery when the nurse took her and us to PICU.

I got to hold her at about 5:45 pm. It was then that she ate 5 ounces of formula. At 6 pm was the last time they gave her morphine. She was able to go with just Tylenol every four hours after that. Her right eye at about 7pm started to swell and looked very black and blue. I was able to stay the night in PICU with her.

The next morning when Dr. Menezes came in to check on Mariah He told the nurse to go ahead and give her the blood transfusion. His theory was since she was on the low end of where she needed to be, and since it was my husband who donated, that to go ahead and give her the blood to get her on the high end of counts before she went home.

Mariah's right eye by this time was swelled shut but her left eye only had a little bruise in the corner and she still had full use of it. At about 1pm on Wednesday they transferred her to her own room. My husband and I were both able to stay with her in this room. Mariah's right eye was only swelled shut for about 12 hours. She was able to see through a slit at first but it continued getting better after that as the day went on. Her left eye never swelled.

On Thursday morning, two days after her surgery, they unhooked her from all the machines. They kept the IV plug in her hand though for just in case. That afternoon she was measured for a precautionary helmet to wear for 6 weeks after surgery. She only has to wear it when she is in the car, playing on the floor and when there is a lot of kids around. A little after that the nurse came in and removed the IV plug. YAY! After that it was easier to hold her and not worry that we were going to bump something and hurt her (except her head-of course).

Thursday night we were able to take Mariah for a ride in her stroller around the hospital. She loved the new scenery! The next day, on Friday afternoon- three days after surgery, Dr. Menezes' nurse practitioner came in and removed the turban. The incision didn't look as bad as I thought it would. (Mariah had a straight incision with a small wave in it kinda. They used absorbable stitches inside and out plus they used the medical glue over the outside stitches) Kathleen, the nurse practitioner then put a strip of bandages over her incision and instructed us to change them once before she came back for her two week follow up appointment.

We stayed at the hospital one more night and was able to go home Saturday, September, 22,01, four days after her surgery. Mariah is now a little over four weeks post-op and is doing wonderfully!! It amazes me how well these babies do! Her incision is pretty well healed and looks great! Her brothers haven't left her alone since she's gotten home. My husband and I are closer than we ever have been. I look at my life a lot differently now.

I am so thankful to so many people: Dr. Harrison- our family doctor who didn't think I was being an overprotective Mom, Jennifer Pitchke - who was so helpful in the beginning of this whole ordeal- Amy; Max's mom who talked to me for over an hour on the phone, Our Pastor, Marcus Badgley who came to sit with us during the wait of her surgery, Dr. Menezes, Kathleen Donavon, Dr. Canady, their staffs and all the nurses for their expertise, My mom, my Husband's parents and my best friend Chris who helped watch our boys while we were in Iowa City, AND all our family and friends and church congregation who prayed for us.

This has been a very overwhelming ordeal. We know we have truly been blessed! The best thing I feel I did for my daughter during this whole thing is love her, of course- and I tried to get as much information I could on her condition and the types of surgeries there are available out there to correct it. I went with my heart and 'gut' feeling which led me to Iowa City to have the CVR and orbital advancement done. I don't think I will regret any of it.

All I can do now is pray that it is all over and we only have to endure the one surgery that is already behind us. I'm going to take one day at a time.

If you would like to email me with any questions my email address is: My3zjm@yahoo.com

Mom to Zackary, Jacob, Mariah (cvr and forward orbital advancement of right coronal suture-done 9/18/01)

updates: On March 13th 2002 we went to Iowa City for Mariah's six month check up. We met with both her neurosurgeon and plastic surgeon. They are both pleased with the progress so far. Mariah isn't as asymmetrical as she was and her reflection is better (not so catywompus). We will go back for her one year check-up in September of 2002. At that time they will be doing xrays also.

Mariah also has been to the eye doctor- we have been told that the Cranio hasn't affected her eyesight. We also had a genetics appointment last December- they feel her Cranio isn't linked to a syndrome. Mariah started walking a couple weeks ago and is a very happy 11 month old! If anyone who is dealing with their child being diagnosed with Craniosynostosis (especially coronal) and needs someone to talk to, please email me.