Fiona Morris
Fiona was diagnosed with metopic craniosynostosis at 4 months old after me begging for a referral to a specialist from my family doctor. When Fiona was born it was very obvious when I look back that she had cranio, but the OB, the nurses and our family doctor told me that it was because she was breeched.
We met with a neurosurgeon at the Hospital for Sick kids in Toronto when she was 4 months old, he examined her and told us that the only way to fix her skull was with surgery, he told us all the things that could go wrong, I left the office in a fog…..I cried for hours. A month later we met her wonderful plastic surgeon Dr. John Phillips. He is so down to earth and made Keri (my husband) and I feel at ease. He answered all my questions. He told us that Fiona would be in surgery for 5-6 hours, he uses dissolvable plates and screws. Her surgery was set for Sept 26th 2007….she was 10.5 months old. The day of the surgery was full of emotions, handing your baby over is the most heartbreaking thing I have ever had to do, but once I got into the waiting room I felt a sense of calm, I knew she would be OK. I saw her in the ICU with her new forehead, she was beautiful….she started walking 2 weeks post op.
Fast forward, she is now 4.5 years old, she is in kindergarten and is as happy as can be; she wears a helmet at school because we still could feel 2 large open spots where the bone has not grown back. She had her 3 year check up with Dr. Phillips in December 2010. He confirmed our suspicions. She didn’t heal properly, she had a CT done in January and to our surprise most of her skull from the coronal scar is still open, we were in shock. She will be having surgery this fall 2011, they are making titanium plates to put over the soft spots, she also had bone reabsorption over her left eye, they are making an implant out of PEEK material to help contour her forehead. She also had too much bone growth between her eyes so they will be shaving down the bone, they also are going to fix her scar, they are going to make it thin because it’s very thick right now. We were told this will be a 3-4 hour operation; she will be in the ICU for a night and on the regular floor for 2-3 days, she will have the drain tubes again. She will be almost 5 at the time of the surgery. We were told that this happening is extremely rare less than 5% of cases according to her surgeon.
We met with a neurosurgeon at the Hospital for Sick kids in Toronto when she was 4 months old, he examined her and told us that the only way to fix her skull was with surgery, he told us all the things that could go wrong, I left the office in a fog…..I cried for hours. A month later we met her wonderful plastic surgeon Dr. John Phillips. He is so down to earth and made Keri (my husband) and I feel at ease. He answered all my questions. He told us that Fiona would be in surgery for 5-6 hours, he uses dissolvable plates and screws. Her surgery was set for Sept 26th 2007….she was 10.5 months old. The day of the surgery was full of emotions, handing your baby over is the most heartbreaking thing I have ever had to do, but once I got into the waiting room I felt a sense of calm, I knew she would be OK. I saw her in the ICU with her new forehead, she was beautiful….she started walking 2 weeks post op.
Fast forward, she is now 4.5 years old, she is in kindergarten and is as happy as can be; she wears a helmet at school because we still could feel 2 large open spots where the bone has not grown back. She had her 3 year check up with Dr. Phillips in December 2010. He confirmed our suspicions. She didn’t heal properly, she had a CT done in January and to our surprise most of her skull from the coronal scar is still open, we were in shock. She will be having surgery this fall 2011, they are making titanium plates to put over the soft spots, she also had bone reabsorption over her left eye, they are making an implant out of PEEK material to help contour her forehead. She also had too much bone growth between her eyes so they will be shaving down the bone, they also are going to fix her scar, they are going to make it thin because it’s very thick right now. We were told this will be a 3-4 hour operation; she will be in the ICU for a night and on the regular floor for 2-3 days, she will have the drain tubes again. She will be almost 5 at the time of the surgery. We were told that this happening is extremely rare less than 5% of cases according to her surgeon.
Eli Lenac
Elijah (Eli) is our 2nd child, little brother to Noah. The pregnancy was rough from the get go. I experienced severe nausea throughout, a lot of first trimester bleeding due to a subchorionic hemorrhage (thankfully that passed around 15-16 weeks), then a CPC scare (Choroid Plexus Cyst) spotted in the brain during our 20 week routine gender scan (thankfully that cleared by week 32). He finally arrived 1 day after his due date on August 4, 2010 2:03 PM after a very short labor and delivery. Eli weighed in at a whopping 9 lbs, 1 ounce and measured 21.5 inches long. He appeared to be perfect in every way.
I took Eli in for his 2 month well check with our family pediatrician, Dr. Rudnicki of Children’s Medicial Group, PC in Atlanta. Eli checked out just beautiful, however the doctor was slightly concerned with the elongated shape of his head. She said it was possible that the shape was due to his size and positioning in the uterus coupled with the fact that he did get stuck a while in the birth canal and vacuum use during delivery. She had me set up an appointment with her the following month so she could re-measure his head. We returned 3 weeks later. Though the overall circumference was right on track, she was very concerned with the shape and lack of “soft spots”. She was trying her best not to alarm me, but noted in his chart straight away that she suspected Craniosynostosis and recommended that we consult with a Pediatric Neurosurgeon.
We scheduled an appointment right away (November 9, 2010) with Dr. Bruan Brahma, a Pediatric Neurosurgeon at Children’s HealthCare of Atlanta. We laid little Eli down on the table and Dr. Brahma immediately diagnosed him with Sagittal Craniosynostosis. Dr. Brahma called his consulting Pediatric Craniofacial Specialist Dr. Burstein who squeezed us in immediately that day as well. He confirmed the diagnosis. They Eli up to have a CT Scan, which was merely a formality at that point. The CT scan was completed on November 16, 2010 which confirmed what we all already knew.
Eli had just turned 3 months, so both surgeons considered him a viable candidate for the less evasive endoscopic procedure, however both strongly urged us to go forward with a CVR (Cranial Vault Remodel). After exhausting research, joining several support groups, and talking to several Cranio parents who had been through both procedures, we made the decision to schedule Eli for the CVR.
The weeks leading up to the surgery were the most difficult- just thinking about the “what ifs”. Eli’s surgery was on Valentine’s Day- Monday February 14th, 2011. It was the longest day in both mine and my husband’s lives. Thankfully the surgery was “very uneventful” according to both surgeons and they were both extremely pleased with the outcome. Eli made it to the other side like a champ, our little “Super Eli”. He spent 1 night in the PICU, and just (2) nights in the general surgery care floor. He was released to come home on Thursday February 17th.
Surgery didn’t keep our little Eli down for long! It was amazing that in just a matter of days he was sitting up and standing in his exersaucer playing with his toys, smiling, and laughing just like nothing had ever happened! Today he is 8 months old, hitting all of his milestones right on target and his surgeons and family pediatrician could not be more pleased with his progress. We’ll have another post op appoint in about 4 months.
We never could have made it through without the amazing love, support, and prayers from our family and friends, including our new friends from Avery’s Angels, CAPPS Kids, Cranio Kids, and Alexa’s Appeal.
I took Eli in for his 2 month well check with our family pediatrician, Dr. Rudnicki of Children’s Medicial Group, PC in Atlanta. Eli checked out just beautiful, however the doctor was slightly concerned with the elongated shape of his head. She said it was possible that the shape was due to his size and positioning in the uterus coupled with the fact that he did get stuck a while in the birth canal and vacuum use during delivery. She had me set up an appointment with her the following month so she could re-measure his head. We returned 3 weeks later. Though the overall circumference was right on track, she was very concerned with the shape and lack of “soft spots”. She was trying her best not to alarm me, but noted in his chart straight away that she suspected Craniosynostosis and recommended that we consult with a Pediatric Neurosurgeon.
We scheduled an appointment right away (November 9, 2010) with Dr. Bruan Brahma, a Pediatric Neurosurgeon at Children’s HealthCare of Atlanta. We laid little Eli down on the table and Dr. Brahma immediately diagnosed him with Sagittal Craniosynostosis. Dr. Brahma called his consulting Pediatric Craniofacial Specialist Dr. Burstein who squeezed us in immediately that day as well. He confirmed the diagnosis. They Eli up to have a CT Scan, which was merely a formality at that point. The CT scan was completed on November 16, 2010 which confirmed what we all already knew.
Eli had just turned 3 months, so both surgeons considered him a viable candidate for the less evasive endoscopic procedure, however both strongly urged us to go forward with a CVR (Cranial Vault Remodel). After exhausting research, joining several support groups, and talking to several Cranio parents who had been through both procedures, we made the decision to schedule Eli for the CVR.
The weeks leading up to the surgery were the most difficult- just thinking about the “what ifs”. Eli’s surgery was on Valentine’s Day- Monday February 14th, 2011. It was the longest day in both mine and my husband’s lives. Thankfully the surgery was “very uneventful” according to both surgeons and they were both extremely pleased with the outcome. Eli made it to the other side like a champ, our little “Super Eli”. He spent 1 night in the PICU, and just (2) nights in the general surgery care floor. He was released to come home on Thursday February 17th.
Surgery didn’t keep our little Eli down for long! It was amazing that in just a matter of days he was sitting up and standing in his exersaucer playing with his toys, smiling, and laughing just like nothing had ever happened! Today he is 8 months old, hitting all of his milestones right on target and his surgeons and family pediatrician could not be more pleased with his progress. We’ll have another post op appoint in about 4 months.
We never could have made it through without the amazing love, support, and prayers from our family and friends, including our new friends from Avery’s Angels, CAPPS Kids, Cranio Kids, and Alexa’s Appeal.
Cole Hittler
After having a wonderful boy and girl, our family was surprised to hear we were to be blessed with a new baby in August 2009. We couldn't be happier, and everyone was super excited for us. Mr. Cole Dennis was born at 5:36 pm on April 29th 2010 at St. Luke's here in the St. Louis area, just 2 days after his big sister turned 6. He was a perfect bundle of joy, 6lbs 3oz of LOVE!!! We welcomed our new boy by building him his very own room and baby proofing, although our home was pretty much still baby proofed from our older son. Cole was an amazing baby, took to life like a pro, and was growing normally, he was such an easy going, lovable lil man. Until his 4 month check up at our pediatricians office on Sept. 7th, when our doctor noticed what she called a red flag, in the shape of my perfect son’s head. She told me to be prepared he may need surgery. And we thought shots were going to be hard.....I started freaking out, and was of course by myself. I called my husband right away as the doctor left the room to get some paperwork for me to read about the condition she thought Cole may have. He was dumbfounded and didn't know what I was talking about, and as I think about it....I realize now, I didn't know what I was talking about either. Then, nurse Leslie came in with a box of tissues, I knew right then and there......SOMETHINGS WRONG. It was the worst day of my life. As Leslie consoled me, and the doctor rambled on and on and I was scared to death.....I looked at Cole and he smiled at me. I was LOST in his eyes and couldn't tell you what the doctor was saying, it all sounded the same to me!!!! I tried to hold myself together to make to to the truck, so I could break down the way I wanted, I was trying to be the strong mom, the "I can handle anything" mom. And once we were in the truck I just lost it. I think I needed to loose it, so I could get over that part, and get to doing what's next.
We made our CT appt, right away. Later the same week at Cardinal Glennon.
Then came the roller coaster ride of hell. See, our doctor was out of the office and she had her fill-in call me with the results.....no biggie right. However, her fill-in was UNaware of Cole's case and read the CT scan to me, as benign. She said no worries everything looks great....and again threw that benign word at me, and told me to breath easy. I DID TOO, but only for a minute. I kept thinking to myself, huh can his skull or any bones be benign? Is that right, that doesn't sound right? I was worried and called back and asked her how did the SUTURES in my sons head look, the bones and his whole noggin. That's when she said, well your right....I was looking at the brain structure and cells. I better call the radiologist back, I asked if I could just call them for crying out load, as I was uncontrollably upset....she said that she would be the one they would only talk to and assured me she'd call me right back. AND SHE DID.......the radiologist confirmed the metopic suture was closed and referred me to a plastic surgeon. I knew it! I just knew it!!! See, I had be doing my research that week to find out as much info on this "craniosynostosis" and just didn't think benign, was the word I was looking for. In children with craniosynostosis the sutures in the skull close prematurely and can cause a laundry list of future issues, MOST importantly not giving the brain proper room to grow. I was heartbroken knowing that my son has this and WILL need surgery, he's just a baby.....just started eating solid food, never had a dose of Tylenol in his life and now he's facing surgery. WHY? I was empty because I knew that I could do nothing about this, and I'm his mama, I can fix anything and make it better, right! I had to be strong for my family, but was having a hard time finding the strength. I cried endlessly, felt sorry for my son, and got sick from worrying about what can happen. I was so scared, and quite frankly IT SUCKED! Once we knew what had to happen and who we needed to see, that's when I began doing even MORE research and to my surprise found that St. Louis Children's Hospital has a plastic surgeon/neurosurgeon team that can approach this endoscopic, as in a small incision is made and NO blood transfusions, minimal blood loss, shorter hospital stays, and so on and so forth. Dang right I called them right then and there, set up an appt. right away, like the next week.
I had a CD of my sons CT scan equipped with a box of tissues, as we met with Sybil Naidoo (nurse practitioner) and Doctors Woo and Smyth on our wedding anniversary Sept. 21. Dr. Woo explained that Cole WAS a candidate for the endoscopic procedure and that he would like to set up surgery asap, like next week. Things were happening super fast, and I felt another roller coaster ride from hell coming, but my husband and I talked and said YES, let's get this done. See, endoscopic surgery is only successful in baby's under 6 months....Cole was working on 5 months and so time was a lil bit of a issue. We didn't have it, we needed to decide and get it over with. WE DID, we left the office that day with a Sept 28th date for surgery, HELLO, we had a week to prepare! Well, honestly I think in the back of my mind I was always trying to prepare....we knew it was coming! I kept busy like a 9 month pregnant lady would do if she was nesting. I cleaning, and cleaned....I got two of every single item describable for the house, it was like I was preparing to bring a baby home again...I disinfected and wiped every wall of the house down....and time flew. Before we knew it, it was time! It was the night before surgery. We were the first case that morning and were to be downtown super early and hit the hay super early. And can you believe it, I couldn't sleep....imagine that, right. I paced the halls, played on Facebook, watched TV, even did a load of laundry. My stomach was a empty pit of emptiness, on our way that morning....it was raining. It was about 6ish not much going on just yet at the hospital, quiet, staff getting ready for the day....we were greeted and showed to our private waiting area. When they came to get us to go back to prep, I could barely walk. But I was there and doing what a mom needed to do. This was all for COLE and he's number one, he needs this, and WILL get this surgery. Tracey....just repeat that over and over....a moms gotta do, what a moms gotta do....even if it SUCKS! I think I was borderline insane by that time, but I was there. Bill was great support the whole time, UNTIL it came time to get Cole in his lil robe thing. He began to cry, I began to cry as well....I think it hit him then, it's time and your boy's getting surgery. All of a sudden it hit me, and I became stronger....I could talk better and was consoling Bill, it was role reversal in its finest, and that's when I knew it would be OK. Yeah my big old badass husbands crying and my babies getting surgery today, but it will be OK.....GODS here! I knew it....I just knew IT! I couldn't bring myself to hand Cole to the surgeon that morning, Bill was very strong in taking that feat, but knew it would be OK....even if were crying in the hallway like a couple crazy people....I knew it would be OK. And it was.....Cole's surgery flew by, thanks to my bestest friend Jen for coming to sit with us....the first part of the surgery I was occupied with me being sure she was able to find us, and the second part was occupied by talking with her and before I knew it, my lil sorta like applebee's buzzer was going off and it was time to head to recovery. They even let Jen ride up the elevator with us all....Cole was still sleeping, occasionally giving a big sigh as we headed to the next venture in this mission.
Recovery was brief and uneventful. We stayed with a team of three nurses who monitored his vitals and every move for about 20 minutes before getting the OK to head to our new room in the PICU. Cole was in room 28 out of 42 in the PICU and once there, he woke up. He was unhappy, but awake. As I tried to pick him up to love on him he shouted in pain, I almost fainted as I was clueless to the pain he was in. I was lucky my PICU nurse Sharon was behind me. Unfortunate it is something that happens to often, parents are known to faint when seeing their child in pain, she explained to me as if it was routine or something. She then suggested we give Cole a dose of morphine to take the edge off and to help him sleep....sleep is good for healing. I said yes I do not want him in pain of course. It was the only dose of morphine he had in the PICU, for when he woke up he smiled and was playing, not but maybe 4 hours after surgery, HE WAS SMILING AT ME! The nurses were even surprised to see such a big smile. Just Tylenol the rest of our stay. Cole was eating, well, sucking a bottle down. He seemed great to me, but had that darn, scrap on his head, as my 6 year old explained once to her friends, and I didn't like it. It was little only 3 inches or so, and he still had marker all over his forehead from where they wrote on him, marking the place to remove bone. It took some getting use too. He didn't notice a thing except all the toys, a.k.a. wires and such coming from his body. He loved to send the nurses running by pulling them off. New toys are good. Cole's overnight stay was great and we were headed home after breakfast. Just like that, we were headed HOME! Now, Cole's swelling began and whoa, that was a shocker....I'd say about 4-5 days till the swelling went down, and he had terrible black eyes. A good friend once commented on a Facebook pic, he's the cutest lil raccoon! Cole was fitted with a helmet post-op, which would insure a nice round regrowth, as the body will still continue to grow bone. Cole's suture will once again close, but this time it will be at the right time in life and not prematurely. He adjusted well to his new "hat", and has been progressing wonderfully. He will have another CT scan done one year post-op, but is trucking along like any almost one year old. As his first birthday approaches I think back at the last year and know, we may be the luckiest family in the world. I will never forget the strength Cole gave me during this time, and how strong I was for him, because deep down handing him over to a surgeon at 4 months old is only the beginning of the things we'd all do for our babies!
We made our CT appt, right away. Later the same week at Cardinal Glennon.
Then came the roller coaster ride of hell. See, our doctor was out of the office and she had her fill-in call me with the results.....no biggie right. However, her fill-in was UNaware of Cole's case and read the CT scan to me, as benign. She said no worries everything looks great....and again threw that benign word at me, and told me to breath easy. I DID TOO, but only for a minute. I kept thinking to myself, huh can his skull or any bones be benign? Is that right, that doesn't sound right? I was worried and called back and asked her how did the SUTURES in my sons head look, the bones and his whole noggin. That's when she said, well your right....I was looking at the brain structure and cells. I better call the radiologist back, I asked if I could just call them for crying out load, as I was uncontrollably upset....she said that she would be the one they would only talk to and assured me she'd call me right back. AND SHE DID.......the radiologist confirmed the metopic suture was closed and referred me to a plastic surgeon. I knew it! I just knew it!!! See, I had be doing my research that week to find out as much info on this "craniosynostosis" and just didn't think benign, was the word I was looking for. In children with craniosynostosis the sutures in the skull close prematurely and can cause a laundry list of future issues, MOST importantly not giving the brain proper room to grow. I was heartbroken knowing that my son has this and WILL need surgery, he's just a baby.....just started eating solid food, never had a dose of Tylenol in his life and now he's facing surgery. WHY? I was empty because I knew that I could do nothing about this, and I'm his mama, I can fix anything and make it better, right! I had to be strong for my family, but was having a hard time finding the strength. I cried endlessly, felt sorry for my son, and got sick from worrying about what can happen. I was so scared, and quite frankly IT SUCKED! Once we knew what had to happen and who we needed to see, that's when I began doing even MORE research and to my surprise found that St. Louis Children's Hospital has a plastic surgeon/neurosurgeon team that can approach this endoscopic, as in a small incision is made and NO blood transfusions, minimal blood loss, shorter hospital stays, and so on and so forth. Dang right I called them right then and there, set up an appt. right away, like the next week.
I had a CD of my sons CT scan equipped with a box of tissues, as we met with Sybil Naidoo (nurse practitioner) and Doctors Woo and Smyth on our wedding anniversary Sept. 21. Dr. Woo explained that Cole WAS a candidate for the endoscopic procedure and that he would like to set up surgery asap, like next week. Things were happening super fast, and I felt another roller coaster ride from hell coming, but my husband and I talked and said YES, let's get this done. See, endoscopic surgery is only successful in baby's under 6 months....Cole was working on 5 months and so time was a lil bit of a issue. We didn't have it, we needed to decide and get it over with. WE DID, we left the office that day with a Sept 28th date for surgery, HELLO, we had a week to prepare! Well, honestly I think in the back of my mind I was always trying to prepare....we knew it was coming! I kept busy like a 9 month pregnant lady would do if she was nesting. I cleaning, and cleaned....I got two of every single item describable for the house, it was like I was preparing to bring a baby home again...I disinfected and wiped every wall of the house down....and time flew. Before we knew it, it was time! It was the night before surgery. We were the first case that morning and were to be downtown super early and hit the hay super early. And can you believe it, I couldn't sleep....imagine that, right. I paced the halls, played on Facebook, watched TV, even did a load of laundry. My stomach was a empty pit of emptiness, on our way that morning....it was raining. It was about 6ish not much going on just yet at the hospital, quiet, staff getting ready for the day....we were greeted and showed to our private waiting area. When they came to get us to go back to prep, I could barely walk. But I was there and doing what a mom needed to do. This was all for COLE and he's number one, he needs this, and WILL get this surgery. Tracey....just repeat that over and over....a moms gotta do, what a moms gotta do....even if it SUCKS! I think I was borderline insane by that time, but I was there. Bill was great support the whole time, UNTIL it came time to get Cole in his lil robe thing. He began to cry, I began to cry as well....I think it hit him then, it's time and your boy's getting surgery. All of a sudden it hit me, and I became stronger....I could talk better and was consoling Bill, it was role reversal in its finest, and that's when I knew it would be OK. Yeah my big old badass husbands crying and my babies getting surgery today, but it will be OK.....GODS here! I knew it....I just knew IT! I couldn't bring myself to hand Cole to the surgeon that morning, Bill was very strong in taking that feat, but knew it would be OK....even if were crying in the hallway like a couple crazy people....I knew it would be OK. And it was.....Cole's surgery flew by, thanks to my bestest friend Jen for coming to sit with us....the first part of the surgery I was occupied with me being sure she was able to find us, and the second part was occupied by talking with her and before I knew it, my lil sorta like applebee's buzzer was going off and it was time to head to recovery. They even let Jen ride up the elevator with us all....Cole was still sleeping, occasionally giving a big sigh as we headed to the next venture in this mission.
Recovery was brief and uneventful. We stayed with a team of three nurses who monitored his vitals and every move for about 20 minutes before getting the OK to head to our new room in the PICU. Cole was in room 28 out of 42 in the PICU and once there, he woke up. He was unhappy, but awake. As I tried to pick him up to love on him he shouted in pain, I almost fainted as I was clueless to the pain he was in. I was lucky my PICU nurse Sharon was behind me. Unfortunate it is something that happens to often, parents are known to faint when seeing their child in pain, she explained to me as if it was routine or something. She then suggested we give Cole a dose of morphine to take the edge off and to help him sleep....sleep is good for healing. I said yes I do not want him in pain of course. It was the only dose of morphine he had in the PICU, for when he woke up he smiled and was playing, not but maybe 4 hours after surgery, HE WAS SMILING AT ME! The nurses were even surprised to see such a big smile. Just Tylenol the rest of our stay. Cole was eating, well, sucking a bottle down. He seemed great to me, but had that darn, scrap on his head, as my 6 year old explained once to her friends, and I didn't like it. It was little only 3 inches or so, and he still had marker all over his forehead from where they wrote on him, marking the place to remove bone. It took some getting use too. He didn't notice a thing except all the toys, a.k.a. wires and such coming from his body. He loved to send the nurses running by pulling them off. New toys are good. Cole's overnight stay was great and we were headed home after breakfast. Just like that, we were headed HOME! Now, Cole's swelling began and whoa, that was a shocker....I'd say about 4-5 days till the swelling went down, and he had terrible black eyes. A good friend once commented on a Facebook pic, he's the cutest lil raccoon! Cole was fitted with a helmet post-op, which would insure a nice round regrowth, as the body will still continue to grow bone. Cole's suture will once again close, but this time it will be at the right time in life and not prematurely. He adjusted well to his new "hat", and has been progressing wonderfully. He will have another CT scan done one year post-op, but is trucking along like any almost one year old. As his first birthday approaches I think back at the last year and know, we may be the luckiest family in the world. I will never forget the strength Cole gave me during this time, and how strong I was for him, because deep down handing him over to a surgeon at 4 months old is only the beginning of the things we'd all do for our babies!
Laredo Adams
Don't be fooled in to thinking Cranio Kids are held back!! Check out Laredo all geared up and playing HOCKEY!!!! Keep an eye out for this future NHL Star!!!
Jacob Warren
hello....My sons name is Jacob. He is 11 years old. We started on the cranio journey in Feb 2000 when he was just 2 months old. He was diagnosed with Metopic CS. He had his first CVR w/ orbital advancement in May 2000 at age 4 months. As soon as he was old enough to talk he complained of headaches. Finally after 9 years of going to the NS and PS saying there has to be more you can do, they did another reconstruction in July 2009. This time they removed 2 of his ribs to use for grafts to help in the shaping. Within 2 weeks of surgery, I knew something was wrong as his incision didnt appear to be closing correctly. I took him back for apts and 4 er trips later, they admitted him, and reopened the incision to "irrigate" it. Within 2 weeks after that, the same thing started happening, again it was at least another 4 trips to ER (mind you we lived 3 hours each way at the time from the hospital). Again they finally admitted him and in Oct of 09, reopened teh incision yet anotehr time, irrigated it and cultured a piece of plate they removed. The whole time the parts of the incision were open you could actually tap on bone. The incision never completely closed up until mid-march 2010. In June 2010, he had a follow up with his PS who completely cleared him said he was fine to do whatever he wanted to do. Even though I was still insisting something was wrong and wanted answers to why it had taken so long to heal and why he was still having headaches. Luckily within the next month I was able to get him in at Chicago University. They found a coagulase negative staph growing on his skull, that had most likely been there the entire past year, which is why the incision didnt want to close up. They did surgery in Sept 2010 to remove all the hardware that had been put in the year before. They had wanted to remove the rib grafts as well, but the infection was so bad, it would make his skull too unstable to remove these. Jake was sent home with a cook central line so he could receive IV abts. He received tehm for 3 weeks, tehn teh central line was removed and he has been on oral abt (clyndomyacin) ever since. At his apt on March 31st in Chicago, the PS said he needs more reconstructive surgery as his forehead is too narrow again. The NS said his bone is still too infected to proceed, and it could take 2-3 years before anything can be done now. They are now saying he has osteomyelitis in his skull bone. As a nurse and mostly as his mother and his biggest advocate, I am not willing to "sit and wait 2-3 years" for something to be done. I have talked to Dr Genecov's intake nurse and she has told Jakes story to Dr Genecov, and he feels like he may be able to help Jake. In talking to many cranio parents, the Drs in Texas do great work for our cranio kids. I am writing telling you Jake's story in hopes you will help spread his story, and to see if there is any help you can give us to get him to his apt. He is scheduled to see Dr Genecov on May 2, and May 3. I have emailed 2Flight places (Miracle Flights, Angel Flights) and also the Jorge Posada Foundation and Chers Foundation CCA in hopes that someone will be able to help me get Jake to and from his apt in May. Thank you in advance for anything your group is able to do!
Nolan Rohr
When Nolan was first born I noticed nothing he was a beautiful little baby boy, looks a lot like his big brother. At about 2 weeks old I noticed his temple on the right side of his head was more indented then the left. At his circ. follow up appointment I pointed out to the pediatrician who just thought it was still just something that happened at birth and that it would correct it self. Then at his 1 month appointment I brought it up again because nothing had changed and I now noticed a difference in his right eyebrow as well. She looked at it and brought up the word Craniosynostosis and referred us to a neurosurgeon. Daddy and I were worried at this point, but thought surely its nothing, having to go to a Neurosurgoen was scary in its self. We met with the Neurosurgeon on January 6th when Nolan was 6 weeks old and they confirmed it was right Coronal Craniosynostosis. We were devastated to find out that our little boy was going to have to have surgery. About a week later Grandma and Grandpa Rohr called us with a new procedure they do for this that is suppose to be less invasive so of course we looked into it right away! On January 17th we went to get CT scans taken of Nolan's head to send to the Neurosurgeon in San Antonio, TX who specialized in this new procedure called Endoscopic Craniectomy. The wait to find out was horrible. We heard back from them finally on January 25th and they told us that Nolan didn't need surgery and that all his sutures were open. We were so excited. Just to reasure us that everything was fine I then sent the scans back to the first doctor we saw in Henderson, NV. She called me back and said to NOT rule out cranio. and to make sure we have close follow up. So at this point Ryan and decided we needed to see another Neurosugeon so we found one in LA. On February 16th we headed to LA. At that visit the doctor said yes Nolan had right coronal cranio. We took this as our final anwer, but being that we were moving we needed to find a new doctor to do the surgery. The timing they would want to do surgery fell when we would be back in Kansas so we went ahead and found a doctor in Kansas City, MO. We met with him on March 7th. The doctor reviewed our CT scans and he then ordered that we get some new scans taken. From these scans he saw that the sutures were indeed still open and that our son for sure did not have right coronal craniosynostosis but that something was for sure going on be it positional or a very very rare condition called Frontosphenoidal Craniosynostosis. They took pictures for their records and asked me to sign a consent so they could share his pictures in classes to teach others of rare forms. The next day we found out that Nolan did have Frontosphenoidal Cranio. WOW! He is what they think is the 8th known child in the world to have this form. We are still waiting for a surgery date at this point and we can't wait for this to be behind us. In the mean time I have joined a support group called Cranio Kids and another called Avery's Angels and more recently Alexa's Appeal for Craniofacial Awareness. Through these groups I was blessed to find a mother in Denver whos son was number 6 with this condition and a mother whos daughter was number 7. They have been great in answering questions I have, I don't know what I would do without the support of everyone. Nolan is an awesome little guy and so adorable. He is always so happy and we couldn't ask for a more sweet baby! He adores his big brother and is right on track with all his milestones, so although this has been hard and quite a journey we feel blessed that is can be fixed and he will grow to be a handsome happy boy!
Hayden Maavich
Hayden was born Thanksgiving night, Nov 22, 2007. The day after he was born, his father noticed that he just didn't look right, so we brought it up to the doctor, and she mentioned the word "craniosynostosis", but she wouldnt know for sure until a cat scan was performed. A day later, we received the diagnosis. Hayden had left coronal synostosis.
Three weeks later he had endoscopic surgery to release the suture. He also developed plagiocephaly from having torticollis and recieved helmet therapy for the next 8 mos follwing the surgery. When he was 10 mos old, Hayden had another surgery. Cranial vault reconstructive and facial orbital advancement surgery. He recovered quickly and he also received helmet therapy post op for 3 mos following that surgery. The surgeons have told us that there is a possibility he may need another surgery to fill in the gap, but we will not know until he is around the age of 5.
Hayden is a happy little boy and he enjoys making everyone around him smile.
Three weeks later he had endoscopic surgery to release the suture. He also developed plagiocephaly from having torticollis and recieved helmet therapy for the next 8 mos follwing the surgery. When he was 10 mos old, Hayden had another surgery. Cranial vault reconstructive and facial orbital advancement surgery. He recovered quickly and he also received helmet therapy post op for 3 mos following that surgery. The surgeons have told us that there is a possibility he may need another surgery to fill in the gap, but we will not know until he is around the age of 5.
Hayden is a happy little boy and he enjoys making everyone around him smile.
Sam Greer
Sam has a craniofacial condition called Treacher Collins Syndrome (TCS). For Sam in particular this means he was born with a cleft palate, small lower jaw, no ears, minimal cheek bones, and notched eyelids. Sam sees about 12 doctors on a regular basis, has 6 therapists, 5 nurses, and will probably have 10-25 surgeries. Although on the small side, Sam is cognitively & physically developing right on track.
Aiden Skees
Ricky and I welcomed our 2nd baby boy on Monday, February 11, 2008. When Aiden was born, we noticed something didn't look quite right with his hands and feet. The NICU doctor who was present in the room because of Aiden's 5.5 week early arrival immediately came to my bedside and said that Aiden had something called Apert Syndrome. She said she would explain everything to us once they got his breathing under control, but that in a nutshell, this very rare craniofacial condition caused deformities in babies hands and feet, and some potential problems with the way the brain grows.
At birth, Aiden's hands looked as if they were in little fists. His fingers and toes were fused together, however the bone structure for each and every finger and toe were there, just underneath some skin. In addition, one or many of the sutures of the skull that are supposed to slowly close after birth as the brain grows are often times fused prematurely in babies with Apert Syndrome. After some examination the doctors determined that Aiden's front coronal suture was in fact fused. We were relieved to find out, however, that many of the other problematic characterisitics that can be associated with this condition were not plaguing our little guy: a head ultrasound showed that all sections of his brain were there, the right size and look good; a stomach ultrasound showed that his internal organs were all in perfect condition (some babies with Aperts have significant problems with their internal organs); and a pediatric cardiologist confirmed that aside from an innocent murmur, there was no damage to his heart.
The first year of Aiden's life was one riddled with doctors visits, tests, surgeries, and therapies, but he made it through with flying colors. He underwent his first surgery at 9 months old to seperate his fingers and toes. He also had his tonsils and adenoids removed at that time to remedy some breathing issues. The second phase of the finger and toe release was done just 3 months later, a few weeks shy of his first birthday. And finally, in May 2009 he underwent a posterior cranial vault to expand the fused suture in his skull allowing more room for his brain to grow.
We are looking forward to enjoying the next few years surgery free - however he will need several more procedures over the course of the next 10-15 years. Aiden has taught us so much in the short time he has been a part of our family. We feel very blessed that God has chosen us as Aiden's parents and it is our mission to give him, as well as his big brother Ethan, the best life that we can.
Please check out our website for Apert Syndrome Awareness!
www.moreskeesplease.com
At birth, Aiden's hands looked as if they were in little fists. His fingers and toes were fused together, however the bone structure for each and every finger and toe were there, just underneath some skin. In addition, one or many of the sutures of the skull that are supposed to slowly close after birth as the brain grows are often times fused prematurely in babies with Apert Syndrome. After some examination the doctors determined that Aiden's front coronal suture was in fact fused. We were relieved to find out, however, that many of the other problematic characterisitics that can be associated with this condition were not plaguing our little guy: a head ultrasound showed that all sections of his brain were there, the right size and look good; a stomach ultrasound showed that his internal organs were all in perfect condition (some babies with Aperts have significant problems with their internal organs); and a pediatric cardiologist confirmed that aside from an innocent murmur, there was no damage to his heart.
The first year of Aiden's life was one riddled with doctors visits, tests, surgeries, and therapies, but he made it through with flying colors. He underwent his first surgery at 9 months old to seperate his fingers and toes. He also had his tonsils and adenoids removed at that time to remedy some breathing issues. The second phase of the finger and toe release was done just 3 months later, a few weeks shy of his first birthday. And finally, in May 2009 he underwent a posterior cranial vault to expand the fused suture in his skull allowing more room for his brain to grow.
We are looking forward to enjoying the next few years surgery free - however he will need several more procedures over the course of the next 10-15 years. Aiden has taught us so much in the short time he has been a part of our family. We feel very blessed that God has chosen us as Aiden's parents and it is our mission to give him, as well as his big brother Ethan, the best life that we can.
Please check out our website for Apert Syndrome Awareness!
www.moreskeesplease.com
Ryan Koushan
When my husband and I found out that I was pregnant in June of 2006 we were so happy but scared. I had a miscarriage a couple of years before and was afraid that it might happen again. When I went in for my first sonogram I was already over 10 weeks along and got to hear the heart beat. That was the first time I ever got to hear a heartbeat while being pregnant. When I had the miscarriage I didn't get far enough along to ever hear the heartbeat. When I heard Ryan's heartbeat I knew everything was going to be alright and we were so happy.
Ryan was born on February 28, 2007. He was a beautiful baby but I noticed a crease across the top of his head and wondered about it. Since he was my first baby I thought maybe it was supposed to be there and though it would go away on it's own. That didn't happen. At Ryan's 2 month check up his pediatrician told me that he had something called Craniosynostosis and the only way to correct it was to have surgery. As soon as he said surgery my mind just kind of tuned him out and I just remember standing there with my mouth opened and thinking Cranio what???? What is that? I remember thinking this can't be happening. The next few weeks were just crazy. We had so many doctor appointments with different craniofacial surgeons and genetic specialists. Finally it was decided that Ryan would have surgery and on August 6, 2007 he was operated on for Craniosynostosis of the sagittal suture by the amazing Dr. Fearon. The surgery took place at Medical City in Dallas. We had family and friend in from all over and the waiting was horrible. I just remember wishing that I could take his place and that the surgery could be done on me instead. We were all praying so hard in the waiting room that everything would be ok. I remember thinking in my head please God don't let my baby die. After what seemed like days Dr. Fearon and his team came out to the waiting room and told us that he was just fine and in recovery. I was so very happy. Ryan stayed in the hospital for three days and he got pretty swollen and it was very hard to see him like that. I was afraid to touch him but I wanted to hold him so bad. When we got home Ryan recovered really quickly.
Today Ryan is almost two and a half years old and is in great health. He went for his yearly check up with Dr. Fearon in September and we were told that he was doing so well that Dr. Fearon won't need to see him again until he is 5 years old. He is such a happy little boy and the absolute light of my life. Ryan is a very blessed little boy. He doesn't have any permanent damage from the Craniosynostosis. He doesn't have any developmental delays. The only way you can even tell he ever had anything wrong is the wavy scar across the top of his head. I am so thankful that everything went well with his surgery and so thankful to have found other parent to talk about all of this with. Thank God for all of these kids. They are some of the most amazing people I have EVER met in my life.
Ryan was born on February 28, 2007. He was a beautiful baby but I noticed a crease across the top of his head and wondered about it. Since he was my first baby I thought maybe it was supposed to be there and though it would go away on it's own. That didn't happen. At Ryan's 2 month check up his pediatrician told me that he had something called Craniosynostosis and the only way to correct it was to have surgery. As soon as he said surgery my mind just kind of tuned him out and I just remember standing there with my mouth opened and thinking Cranio what???? What is that? I remember thinking this can't be happening. The next few weeks were just crazy. We had so many doctor appointments with different craniofacial surgeons and genetic specialists. Finally it was decided that Ryan would have surgery and on August 6, 2007 he was operated on for Craniosynostosis of the sagittal suture by the amazing Dr. Fearon. The surgery took place at Medical City in Dallas. We had family and friend in from all over and the waiting was horrible. I just remember wishing that I could take his place and that the surgery could be done on me instead. We were all praying so hard in the waiting room that everything would be ok. I remember thinking in my head please God don't let my baby die. After what seemed like days Dr. Fearon and his team came out to the waiting room and told us that he was just fine and in recovery. I was so very happy. Ryan stayed in the hospital for three days and he got pretty swollen and it was very hard to see him like that. I was afraid to touch him but I wanted to hold him so bad. When we got home Ryan recovered really quickly.
Today Ryan is almost two and a half years old and is in great health. He went for his yearly check up with Dr. Fearon in September and we were told that he was doing so well that Dr. Fearon won't need to see him again until he is 5 years old. He is such a happy little boy and the absolute light of my life. Ryan is a very blessed little boy. He doesn't have any permanent damage from the Craniosynostosis. He doesn't have any developmental delays. The only way you can even tell he ever had anything wrong is the wavy scar across the top of his head. I am so thankful that everything went well with his surgery and so thankful to have found other parent to talk about all of this with. Thank God for all of these kids. They are some of the most amazing people I have EVER met in my life.
Charlie Coles
Aiden Howse
Andrew Simon
Bayleigh DeAngelis
Stepheny DeAngelis
Christina Andrews
Joseph Brooks
Julianna Harber
Ashley Bock
Audra Haglund
Wes Taranto
Sara Grace
Wyatt Kier
