| Eric's Cranio Page |
| Eric was born on July 30th 1999 at 12:36pm.He was born at 37 weeks via Repeat C-Section after 4 weeks of pre-term labor.The moment he arrived we knew that this sweet child was going to be one special guy.The Drs. noticed right away Eric's head and face had some asymetry but that was all that was said about it.We left the hospital in three days not knowing that his and our life would be changing so drasticly,so soon. At Eric's 2 week first check up with his pedy the pedy commented on Eric's head and face and said we will give it until his 2 month check up to improve if it doesn't he will send us for some X-Rays to find out what is going on.Eric was also dx with a VSD(ventricular septal defect) at that visit. Well at his 2 month check up at his pedy his head had not changed for the better so off we went to Childrens again this time to get an X-Ray of his head for something the pedy called CRANIOSYNOSTOSIS,his pedy explained that this is where the sutures that are in the baby's skull fuse early and the skullstarts to look a little wacky,in Eric's case his head looked very long and thin.His pedy did tell us if he did have CRANIOSYNOSTOSIS that he would have to have surgery to open up the suture to allow the brain to grow.He did say that there was a possiblity that the suture wasn't closed and it was just positional but he didn't think so because of the head shape.When he left the room to call down to CHOP(Childrens)I completely lost it in the exam room,how could this be happening to him first a heart condition and now this,I wanted to slap myself and hope I would wake up from this awful nightmare.But alas we went to CHOP and the X-ray did reveal that our pedy was correct Eric was dx with a closure of the sagittal suture and we were sent to Dr. Peter Sun in Neurosurgery at CHOP within a week of dx and had a surgery date set for a strip craniotomy on Nov.5th 1999. On the day of surgery Eric was just days over 3 months old and only weighing 8lbs.,he was so plesant that morning as him and I were leaving for the hospital,my hubby had to stay home and get our other two children off to school and daycare and would meet me down there hopefully by the time he was out of surgery.I was so upset as I was driving just hearing Eric in the backseat making his happy little baby sounds,knowing in a matter of hours I would be handing him over to have a major operation on his skull to fix something I had never heard of before a couple of weeks ago,I feared that my sweet baby would come to hate me for what I was about to do to him or worse yet he would die and it would be my fault,though I knew the risks of that happening were very low I just couldn't shake that feeling.Well we got to the hospital and all the pre-surgery stuff went well and now we sit in the holding area which is the last stop before they take him from me and I was doing good until the moment came for him to leave to go to the OR a gave him a light kiss on his forehead so I wouldn't wake him and then turned and left the holding area with tears streaming down both checks.I went to the waiting room to wait for both my husband and word on how Eric was doing in surgery.About a half an hour later a nurse came to me and said Eric was doing fine and they were just starting his surgery.My husband finally got there as they were coming around with another update an hour after the first,they told Eric was doing good and they were almost done.Fifteen minutes after that Dr. Sun came into the waiting room to let us know it was over and Eric had done really well and they would be bringing him up to the PICU in a few so to go wait by the elevators so we could ride up with him.When we first saw him he was so still and had this big wrap on his head but he looked wonderful,no swelling,bruising just our sweet little boy sleeping peacefully.He had surgery on a Friday and we left the hospital on Monday morning,he did real good he had no swelling at all they did have to give him blood during and a little bit more after surgery but other than that this surgery was a lot worse on me and hubby then Eric. |
| My Favorite Links: |
| Eric's Mom |
| Martha DuBow |
|
|
|
|
| All was going well after the sagittal surgery until around 3 months post-op when to our surprise Eric's head started to look bad on the left side of his face and head.We went to see his Neurosurgeon (NSG) and he felt around and decided since he felt like his other sutures were open we would try a molding helmet to help his skull round back out.So in March he started wearing his helmet and we were seen by his NSG once a month and we did see some improvement so we thought but after wearing the helmet 3 months the improvements were not a lot so we were referred to a plastic surgeon and our NSG ordered a CT scan to have done before we saw the plastic surgeon.On July 18th 2000 Eric had his CT and on August 2nd we met for the first time with the plastic surgeon hoping he had the answer why our little man's left side had not caught up to his right.My husband was dead set against putting him through anymore surgeries as I just wanted to do whatever would help Eric to look more like his peers,little did we know that we would ride that the cranio roller coaster again.As he walked into the room I felt sick to my stomach as if I knew bad news was on it's way.After all the Q&A and an exam of Eric he pulled out the CT scans and put them in the view box and with that I think my husband and I both knew they had found something wrong.At that moment even before I heard what he had to say all that I wanted to do was grab Eric and run away and hide and not let anyone find us.As he spoke and told us that his left coronal suture had now closed and he would need to have yet another cranio surgery and this one would be more extensive than his last one.He then sent us up to speak with our new NSG as our old one had left to move to CA. in July.After meeting with him and asking alot of questions on how this could happen a 2nd time and tons more that at this time escape me we were back in the plastic surgeons office discussing what would be going on with this surgery and being told that there might be a chance of more later on.We got a date of Nov. 6th 2000 for this surgery which as it turns out it is one year and one day from his last cranio surgery.Well that night I got on the internet for really the first time other than to play slingo and started to look for info on cs and I found two wounderful groups (Craniosynostosis and Parents Support,CranioSupport) where I found many like my husband and myself that thought we were the only ones dealing with this and they welcomed us with open arms and offered us the support and info we had been looking for at understanding this condition..The time between dx and that surgery date seemed to drag on so slow I thought I would lose my mind and chicken out before it would happen.Well fast foward some the day of surgery has arrived and you know what I thought this time it would be easier since we had been here before but oh was I wrong,if anything it seems to be worse the whole night I just sat in the boys room and looked at Eric and cried thinking and praying at hopefully this would be the last time we would have to ride this roller coaster..This time my husband was there with me and Eric and as we waited for our turn and watching Eric playing in the waiting area broke my heart that he at 15 mo. didn't know what was about to happen to him again and this time he would not escape the swelling that he did the 1st time around,could I handle it at this point I didn't know but for Eric's sake I had to try.They gave him his loopy juice and soon he was off to the OR,in 4.5 hours he was done and we were so happy to see him for the first time he looked so good as his swelling hadn't started yet.Time after the surgey went pretty well for Eric other than he did have to have more blood after surgery as well as frozen cells b/c he was losing too much in his drain but it didn't slow him down,if it was up to him he would have been out of there on the 8th as he was bouncing off the walls being bored.His plastic surgeon did tell us that Eric would definitely need at least one more surgery b/c they had to do more extensive reshaping and had to add more wires to hold everything together. We left the hospital on the 10th and he is still doing well to this day other than a few falls that have resulted in some dents and bumps which they will smooth out in the next surgery.Eric will be seeing his plastic surgeon in a few days(8/7/01) for a check up and I hope with all my heart that he says all is well with Eric and his next surgery is still years off.I will update as soon as we hear more. |
 |
 |
 |
 |
| Eric and daddy 7/02 |
| Eric 9/02 |
| Eric at the Zoo 5/02 |
| 10/26/03-Well this is the long overdo update.A lot has happened since my last updating of Eric's pages.But cranio wise Eric is doing very well and even though over the past year the back of Eric's head is starting to look sagittal again he is having no problems from it.He has had two glowing follow-ups with Dr. Bartlett(plastic surgeon),the last one just a few weeks ago.Eric is still going to need his 3rd surgery in the future but as of now it is still at least 5 or 6 yrs. away.As he has been growing into his forehead those bumps and dents he put in there X-mas of 2000 are smoothing out some.And we hope that it continues as he gets older though we aint fooling ourselves that all will be corrected. Eric is now 4.5 years old and is taking the world on,he is in his last year of preschool and depending on which day you ask ,he has 2 or 3 girlfriends and loves playing with his friends,doing puzzles,working on the computer,really anything that puts his mind to the test.Eric also started wearing glasses this past Sept. whether it is cranio related or Ptosis or the combo of the two who knows but he has taken to them well and we will probably start patching of his right eye(the good one) when we go back to the eye doctor in Dec.Oh well I guess that is about it for his cranio-related stuff for now.here we sit and wait for age 10 to get here so we can maybe put this last surgery behind us. |
 |
| Eric in his new glasses-9/2003 |
 |
| Eric and Robbie |
 |
 |
| Eric 2 days post-op |
| Eric 5 days post-op 11/11/00 |
 |
| Eric 1st grade 9/2005 |
