It wasn't long after she was born I noticed the flat spot above her right eye. At her two week and 2 month check ups I questioned her doctor about it. He said that it was 'molding' from childbirth and not to worry, that it would eventually come out of it.
(notice the indent/flat spot above her right eye. The left photo was taken at a week old, the right photo taken at 4 months old)
Being the avid scrapbooker that I am, I was constantly taking photos of Mariah. I remember thinking that it seemed in several of the photos that her right eye was bigger than her left eye depending on the angle I took the photos. Mariah's image in mirrors seemed a bit 'off' also but I could never put my finger on what exactly was not quite right. At three and half months old I was playing with Mariah in front of a mirror at a store and it hit me... Mariah's ears were not in the same place on each side of her head. Her right ear was pushed forward. I was very upset so the kids and I ended up going home and as soon as I got home I called the doctors' office to make her an appointment. Luckily I was able to get an appointment for the next day with a different doctor from the clinic.
While Mariah was sitting on my lap, Dr. Harrison noticed that her head was asymmetric. He asked me to give him a rattle and he moved it side to side to see if Mariah would follow it. She would to the right but not to the left. He explained the reason was due to a condition called Torticollis. After discussing with me what Torticollis was, he had his nurse set up appointments for Mariah to start seeing a physical therapist for the Torticollis. He then suggested making Mariah an appointment at the hospital to have a catscan done on her head just to be sure he wasn't missing anything. By that time, I felt a bit uneasy but I was glad the doctor was being thorough.
My husband went with me to the hospital for Mariah's catscan. After I being a bit insistent in getting the scan results, the next day Dr. Harrison called me and explained that it showed that her brain looked normal but went on to say that Mariah had what appeared to be a premature fused suture in her skull; a condition known as craniosynostosis. Because Dr. Harrison had never heard of craniosynostosis prior to seeing Mariah, he suggested we meet with a neurosurgeon to look into this condition further. Under his recommendation we made an appointment with a neurosurgeon in Des Moines the next week.
In the meantime, I searched the internet for as much information I could possibly find on craniosynostosis. Up until then, I had never heard of it before. During my internet search I found the CAPPS website. It was comforting to know that we were not the only parents going through all this. Though, I also grew more concerned for my daughter due to all the different stories I read.
The morning after the appointment with the neurosurgeon, I woke up with an uneasy feeling. After asking tons of questions, I was uncomfortable with the neurosurgeon's response that he didn't work with a plastic surgeon. With Mariah having the right coronal suture closed, I was convinced that a plastic surgeon was a must. It was that morning that I called Jennifer who created the CAPPS website to ask her questions. After sharing Mariah's story with her and what we had learned from the neurosurgeon appointment she suggested we get a second opinion. After Jennifer gave me Dr. Menezes' phone number, a neurosurgeon at the Universityof Iowa Hospitals in Iowa City, I called Dr. Harrison's office to ask if he could get Mariah an appointment with Dr. Menezes. He understood my concerns and had no problem with making a consult appointment for Mariah in Iowa City.
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. At that time, very few surgeons were offerering the endoscopic alternative to the CVR procedure so it meant a trip to Missouri if we chose that procedure for Mariah.
Being the avid scrapbooker that I am, I was constantly taking photos of Mariah. I remember thinking that it seemed in several of the photos that her right eye was bigger than her left eye depending on the angle I took the photos. Mariah's image in mirrors seemed a bit 'off' also but I could never put my finger on what exactly was not quite right. At three and half months old I was playing with Mariah in front of a mirror at a store and it hit me... Mariah's ears were not in the same place on each side of her head. Her right ear was pushed forward. I was very upset so the kids and I ended up going home and as soon as I got home I called the doctors' office to make her an appointment. Luckily I was able to get an appointment for the next day with a different doctor from the clinic.
While Mariah was sitting on my lap, Dr. Harrison noticed that her head was asymmetric. He asked me to give him a rattle and he moved it side to side to see if Mariah would follow it. She would to the right but not to the left. He explained the reason was due to a condition called Torticollis. After discussing with me what Torticollis was, he had his nurse set up appointments for Mariah to start seeing a physical therapist for the Torticollis. He then suggested making Mariah an appointment at the hospital to have a catscan done on her head just to be sure he wasn't missing anything. By that time, I felt a bit uneasy but I was glad the doctor was being thorough.
My husband went with me to the hospital for Mariah's catscan. After I being a bit insistent in getting the scan results, the next day Dr. Harrison called me and explained that it showed that her brain looked normal but went on to say that Mariah had what appeared to be a premature fused suture in her skull; a condition known as craniosynostosis. Because Dr. Harrison had never heard of craniosynostosis prior to seeing Mariah, he suggested we meet with a neurosurgeon to look into this condition further. Under his recommendation we made an appointment with a neurosurgeon in Des Moines the next week.
In the meantime, I searched the internet for as much information I could possibly find on craniosynostosis. Up until then, I had never heard of it before. During my internet search I found the CAPPS website. It was comforting to know that we were not the only parents going through all this. Though, I also grew more concerned for my daughter due to all the different stories I read.
The morning after the appointment with the neurosurgeon, I woke up with an uneasy feeling. After asking tons of questions, I was uncomfortable with the neurosurgeon's response that he didn't work with a plastic surgeon. With Mariah having the right coronal suture closed, I was convinced that a plastic surgeon was a must. It was that morning that I called Jennifer who created the CAPPS website to ask her questions. After sharing Mariah's story with her and what we had learned from the neurosurgeon appointment she suggested we get a second opinion. After Jennifer gave me Dr. Menezes' phone number, a neurosurgeon at the Universityof Iowa Hospitals in Iowa City, I called Dr. Harrison's office to ask if he could get Mariah an appointment with Dr. Menezes. He understood my concerns and had no problem with making a consult appointment for Mariah in Iowa City.
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. At that time, very few surgeons were offerering the endoscopic alternative to the CVR procedure so it meant a trip to Missouri if we chose that procedure for Mariah.
Later that week, my husband and I with Mariah traveled to Iowa City to meet with Dr. Menezes. He shared with us that his surgical team included a plastic surgeon. It was very comforting to know that Dr. Menezes had many years of experience and on average, at that time, performed two to three Cranio surgeries per month. After discussing with each other everything thus far that we had been through, it was on our trip back home from Iowa City that my husband and I knew we would be returning back to the University of Iowa Hospitals for Mariah to have her surgery done there. 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. We felt it was the better surgery for coronal sutures.
However, the next day, I called and talked to the nurse, Cathy, in Missouri about the endoscopic procedure. She, too, was very helpful and informative. After getting off the phone with her, I still felt that we were doing the right thing for our daughter in going to Iowa City to have her surgery done there. That afternoon I called Dr. Menezes' office to make the appointment. We were able to get a surgery date for September. So we wait. It was a long six week wait but in a way not long enough to get used to the idea of surgery.
Two weeks before Mariah's surgery date we drove to Iowa City to donate blood and for Mariah to have a 3-D catscan done. My husband was a better match to Mariah than I so he was the one who donated blood for her surgery. Mariah was such a trooper during the 3-D catscan. They gave her an oral sedative. She woke up about five minutes after the scan was over and drank about two ounces of formula. She then went back to sleep and slept all the way home.
Monday September 17th, 2001, Mike, Mariah and I traveled to Iowa City for all the pre-op appointments and to meet with Mariah's plastic surgeon, Dr. Canady. Everything went well.
(this photo was taken at the hotel the night before her surgery)
Two weeks before Mariah's surgery date we drove to Iowa City to donate blood and for Mariah to have a 3-D catscan done. My husband was a better match to Mariah than I so he was the one who donated blood for her surgery. Mariah was such a trooper during the 3-D catscan. They gave her an oral sedative. She woke up about five minutes after the scan was over and drank about two ounces of formula. She then went back to sleep and slept all the way home.
Monday September 17th, 2001, Mike, Mariah and I traveled to Iowa City for all the pre-op appointments and to meet with Mariah's plastic surgeon, Dr. Canady. Everything went well.
(this photo was taken at the hotel the night before her surgery)
Day of surgery:
We got to the hospital on Tuesday Morning at about 6:20 am. When we were given a surgical gown and booties to put on Mariah, it was then that I became a bit emotional over it all. I just held Mariah, hugged her, and kissed her as much as I could. Approximately a half hour later we were lead into the pre-op room where we waited about an hour with her.
(photos taken the morning of her surgery; before surgery)
At about 7:45, Mariah fell asleep in her Daddy's arms. At 8:00 am the anesthesiologists came in to take her. 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 to be able to talk 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 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 served its purpose because there were no surprises during the surgery. Mariah lost very, very little blood during surgery so she did not receive the blood transfusion but Dr. Menezes was still considering giving the blood to her if needed before being released from the hospital. Time would tell. Then approximately ten minutes after we talked with him we were directed to the recovery room.
(above left photo was taken the morning after surgery...the right photo was taken later that morning getting the blood transfusion)
Friday morning Mariah's eye looked so much better and by afternoon it improved even more. Friday afternoon, three days after surgery, Dr. Menezes' nurse practitioner came in and removed the head wrap. The incision didn't look as bad as I thought it would. Mariah had a straight incision with a small wave. Absorbable stitches were used inside and out in addition to a medical glue that was applied over the outside stitches. Kathleen, the nurse practitioner then put a strip of bandages over her incision and instructed us that we would need to change her bandage once before she had to go back for her two week follow up appointment.
We had to stay at the hospital Friday night because we were still waiting on Mariah's helmet. We were able to take Mariah on another stroller ride right before they moved us to yet a different room later Friday night.
We were able to go home Saturday, September, 22,01, four days after her surgery.
(<--photo taken Saturday morning)
Ten days after Mariah's surgery, my husband and I changed Mariah's bandages as instructed to.
At about 7:45, Mariah fell asleep in her Daddy's arms. At 8:00 am the anesthesiologists came in to take her. 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 to be able to talk 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 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 served its purpose because there were no surprises during the surgery. Mariah lost very, very little blood during surgery so she did not receive the blood transfusion but Dr. Menezes was still considering giving the blood to her if needed before being released from the hospital. Time would tell. Then approximately ten minutes after we talked with him we were directed to the recovery room.
(the four photos above were taken in the recovery room as soon as we were able to see her after surgery)
I remember being a bit concerned at what Mariah would look like following surgery. I had no idea what to expect. When we walked in she had both of her eyes open for about 30 seconds. Other than the fact that she had a wrap 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 had us follow her to PICU.
I got to hold Mariah 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. He wanted to bring her blood count up so she would be able to go home sooner than later.
I remember being a bit concerned at what Mariah would look like following surgery. I had no idea what to expect. When we walked in she had both of her eyes open for about 30 seconds. Other than the fact that she had a wrap 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 had us follow her to PICU.
I got to hold Mariah 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. He wanted to bring her blood count up so she would be able to go home sooner than later.
(above left photo was taken the morning after surgery...the right photo was taken later that morning getting the blood transfusion)
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.
(both photos above were taken Wednesday night 9-19-01)
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. Soon after that the nurse came in and removed the IV plug.
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. Soon after that the nurse came in and removed the IV plug.
(photos above were taken Thursday morning; 2 days after surgery)
Thursday night we were able to take Mariah for a ride in her stroller around the hospital. She, my husband and I, all loved the new scenery! It was nice to get out of her room and see other things.
Friday morning Mariah's eye looked so much better and by afternoon it improved even more. Friday afternoon, three days after surgery, Dr. Menezes' nurse practitioner came in and removed the head wrap. The incision didn't look as bad as I thought it would. Mariah had a straight incision with a small wave. Absorbable stitches were used inside and out in addition to a medical glue that was applied over the outside stitches. Kathleen, the nurse practitioner then put a strip of bandages over her incision and instructed us that we would need to change her bandage once before she had to go back for her two week follow up appointment.
(the two photos above were taken Friday morning and the 2 below photos were taken Friday afternoon)
We had to stay at the hospital Friday night because we were still waiting on Mariah's helmet. We were able to take Mariah on another stroller ride right before they moved us to yet a different room later Friday night.
(The four photos above were taken Friday night in our new room. Notice how much her eye had improved just from that morning.)
We were able to go home Saturday, September, 22,01, four days after her surgery.
(<--photo taken Saturday morning)
We got home that afternoon when soon after, Mariah's grandma and grandpa brought the boys home and came over to see Mariah.
(the two photos above were taken Saturday afternoon, the left photo below was taken of Mariah with
her protective helmet on and the below photo on the right was taken on Sunday morning with my Dad)
Ten days after Mariah's surgery, my husband and I changed Mariah's bandages as instructed to.
(the photo above was taken right after I took the bandages off....notice how good the incision looks already)
October 3rd, on my husband and I's anniversary, we had to return to Iowa City for Mariah's first post-op appointments. Kathleen took her bandages off and put a wrap around Mariah's head but Mariah wouldn't keep it on for more than hour so we left it off. That day we also had a follow-up appointment with Dr. Canady.
October 3rd, on my husband and I's anniversary, we had to return to Iowa City for Mariah's first post-op appointments. Kathleen took her bandages off and put a wrap around Mariah's head but Mariah wouldn't keep it on for more than hour so we left it off. That day we also had a follow-up appointment with Dr. Canady.
(The two top photos were taken with Kathleen and the two bottom photos were taken in Dr. Canady's office.)
With the recommendation from Dr. Menezes, Mariah was seen by an eye doctor there at the University of Iowa Hospitals to rule out any eye problems that are sometimes connected with having craniosynostosis, luckily she did not have any eye issues. We also had an appointment with genetics to rule out any syndromes that can be linked to craniosynostosis. After asking my husband and I many questions and looking Mariah over, they concluded that Mariah was an isolated case. Meaning, her craniosynostosis may have been caused in utero due to being cramped in the last trimester. They were unable to find a genetic link. Both the eye and genetic appointments were set up for October 4th.
(<--taken on Oct. 4th at the eye doctors appt.)
With the recommendation from Dr. Menezes, Mariah was seen by an eye doctor there at the University of Iowa Hospitals to rule out any eye problems that are sometimes connected with having craniosynostosis, luckily she did not have any eye issues. We also had an appointment with genetics to rule out any syndromes that can be linked to craniosynostosis. After asking my husband and I many questions and looking Mariah over, they concluded that Mariah was an isolated case. Meaning, her craniosynostosis may have been caused in utero due to being cramped in the last trimester. They were unable to find a genetic link. Both the eye and genetic appointments were set up for October 4th.
(<--taken on Oct. 4th at the eye doctors appt.)
Mariah's incision was pretty much healed four weeks after her surgery. I had fun decorating her precaution helmet, but because she wasn't all that fond of it she didn't wear it for the total of the recommended six weeks.
I am so thankful to so many people: Our family doctor, Dr. Harrison, who listened and cared enough to help us get a correct diagnosis and the answers we needed and for putting up with my mothers intuition. Thanks to Jennifer Pitchke and Amy Galm who were so helpful and supportive during our phone conversations, to Pastor Marcus Badgley who came to sit with us during the wait of the surgery, Dr. Menezes, Kathleen Donavon, Dr. Canady, their staffs and all the nurses for their expertise and compassion, My mom, my Husband's parents and 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 Mariah/us.
-Margaret
Mom to Zackary, Jacob, Mariah (cvr and forward orbital advancement of right coronal suture-done 9/18/01)
-Margaret
Mom to Zackary, Jacob, Mariah (cvr and forward orbital advancement of right coronal suture-done 9/18/01)
***If you or someone you know is dealing with their child being diagnosed with Craniosynostosis (especially coronal) and needs someone to talk to, please feel free to email me at my3zjm@yahoo.com
Updates:
Being a military family who has had to move several times in the last eight years, we feel very fortunate that we've always been able to travel back to Iowa City for Mariah's post-op appointments. Her last appointment was July 30th 2010.. Everything went really well. Dr. Menezes wants to see her again in two years. If all xrays turn out okay, that will be her last appointment with him.
NEW update (May 2012):
Mariah has an appointment this summer with her neurosurgeon the second week in August. If the appointment goes well, it will be her last appointment with Dr. Menezes. She will have xrays done and if they reveal that all is fine he said that more than likely she will be released as a patient of his.
NEW UPDATE (November 2012):
Mariah's appointment with Dr Menezes in August turned out like we had hoped. Her x-rays looked good and he has now released her as his patient. It was a very good day and one that I will never forget.
Click here ---> to see an article that the University of Iowa Hospitals did on Mariah.
Be sure to click on the links to the far right at the top of the page to see pictures of Mariah through the years.
NEW UPDATE: (April 2016)
Mariah recently celebrated her15 year birthday. She is a happy typical teenager who is an A-B student and enjoys participating in Choir, Show Choir and Drama. It is only the persons she is close to that even knows of her craniosynostosis surgery, otherwise it is difficult to tell she ever had surgery as an infant. She does still have some irregular skull bumps here and there but no one has a perfectly shaped head.
Updates:
Being a military family who has had to move several times in the last eight years, we feel very fortunate that we've always been able to travel back to Iowa City for Mariah's post-op appointments. Her last appointment was July 30th 2010.. Everything went really well. Dr. Menezes wants to see her again in two years. If all xrays turn out okay, that will be her last appointment with him.
NEW update (May 2012):
Mariah has an appointment this summer with her neurosurgeon the second week in August. If the appointment goes well, it will be her last appointment with Dr. Menezes. She will have xrays done and if they reveal that all is fine he said that more than likely she will be released as a patient of his.
NEW UPDATE (November 2012):
Mariah's appointment with Dr Menezes in August turned out like we had hoped. Her x-rays looked good and he has now released her as his patient. It was a very good day and one that I will never forget.
Click here ---> to see an article that the University of Iowa Hospitals did on Mariah.
Be sure to click on the links to the far right at the top of the page to see pictures of Mariah through the years.
NEW UPDATE: (April 2016)
Mariah recently celebrated her15 year birthday. She is a happy typical teenager who is an A-B student and enjoys participating in Choir, Show Choir and Drama. It is only the persons she is close to that even knows of her craniosynostosis surgery, otherwise it is difficult to tell she ever had surgery as an infant. She does still have some irregular skull bumps here and there but no one has a perfectly shaped head.
