Charlie's Metopic Journey
I just realised that i never posted Charlie's journey on here so appologies for the delay & i hope you enjoy my little man's story xxx
On July 5th 2006 my beautiful son Charlie was born by emergency caesarean for undiagnosed breech, I couldn’t believe I was finally a mummy but wasn’t prepared for the long & emotional journey that was to follow.
Ide like to share my journey with you in the hope that I can give some help & comfort to others that are just starting on the same path.
Charlie weighed in at the grand total of 6lb 6oz, he was so tiny but I couldn’t wait to hold him. The midwife handed him to my husband Mark all wrapped up and continued to show us that Charlie was born with a large lump on the left side of his head which was called a Haemangioma. She said not to worry as they would scan him & monitor it but it would go down in time.
I couldn’t really take in what she was saying because I immediately noticed his forehead didn’t look right, not flat like a normal babies head but pinched & pointy. I put my fingers straight on his forehead and said ‘what’s wrong with his head?’ but no one answered me.
Back on the ward I was woken at 1.30am by two male paediatricians who wanted to examine Charlie, I hadn’t a clue what was going on and was still completely numb from the caesarean. They decided to take him away to do the exam so not to disturb the other people on the ward.
When they brought him back they started reeling off medical terms & I hadn’t a clue what they were going on about.
Closed sutures, Glandular Hypospadius?????? Cavernous Haemangioma???? Peridiclar skin tag???? What the hell was happening!!!
They told me Charlie needed an X-ray to check his sutures, an ultrasound to make sure the Haemangioma wasn’t attached to the brain, an ultrasound to check his kidneys because of having the skin tag & to see a specialist about his Glandular Hypospadius. Then they left me at 2am in the morning, I just sat there holding my new born son & cried.
The next day Mark came in & I had to tell him everything that had been said the previous night.
Mark went with Charlie for his x-ray but we decided no to tell the family about it unless anything was wrong.
A female paediatrician came to see me later that day & told me not to worry about Charlie’s head, all sutures were open! She said take your baby home & enjoy him. Thank god for that!
We had an appointment to check Charlie’s Haemangioma which thankfully turned out not to be attached to his brain, more good news. His kidneys also turned out fine but they said he definitely had Glandular Hypospadius.
In the mean time Charlie developed 8 strawberry birthmarks all over his body, bless him he was such a happy little man & hadn’t a clue about all the fuss.
I still had this horrible nagging doubt though that Charlie’s head wasn’t right. Non of my friends babies had foreheads like his & whenever they were together you could see so clearly that something wasn’t right but I kept my thoughts to myself because I didn’t want to worry anyone.
We had an appointment come through from the hospital to have Charlie’s Haemangioma checked, he was 12 weeks by this time.
Mark & I sat down in the paediatricians office with Charlie to discuss what I thought was his Haemangioma when he turned round & said ‘If I were you I wouldn’t worry about the Haemangioma ide be more concerned about the shape of his head!’
We both sat there in shock but deep down I already knew something was wrong.
He continued to tell us that nothing could be done, they wouldn’t operate on him as the chances of survival would be slim & that it was just cosmetic anyway so take him home & enjoy him but he will always have a different shaped head. He continued to say that I should try to massage his forehead every day as it’s possible that might help.
Mark & I left there in silence, drove home in silence & didn’t talk when we got home. All those words were spinning round my head I just didn’t know what to do or say.
I did as the paediatrician said, I massaged Charlie’s head every night as I was giving him his last feed. Tears were streaming down my face every night as I did it & sometimes I pressed so hard I left imprints on his forehead!
I visited the doctor almost every week begging them to help me but every time I was told nothing could be done & everybody’s head shape was different. I ended up on antidepressants.
I couldn’t give up hope, I had to do something or at least find someone that could help so that’s when my Internet search began. I didn’t really know much about the Internet so didn’t really know where to start. I also didn’t even know what to search for as I hadn’t at that time got a medical term for Charlie’s condition.
Week after week turned into months. I read every head thread on baby boards.
Charlie was growing up & I was still searching, still visiting the doctors & still crying out for help. I continued to take pictures of Charlie’s head so I could see if he was getting worse & he was.
Charlie had now turned 8 months old, I was still massaging his head but it wasn’t working. I had told my mum by this time that I knew something was wrong but because Charlie had so much hair it was very hard for other people to see unless his hair was wet. I wasn’t giving up, this was my baby & I had to carry on until I found the help I needed, little did I know at that time help was just around the corner!!
While searching the Internet again one night I stumbled upon a website called ‘Headlines’. I browsed their site & I literally jumped out of my chair because what I was seeing and reading described Charlie in every way. I had finally found out what Charlie had, Metopic Synostosis!!!!
I e-mailed Headlines that night & was so relieved when the following morning I had an e-mail back from them asking for my phone number.
I had a phone call from Gil who talked to me for a while & gave me all the information I needed to get Charlie the specialist help he needed.
Within days of that conversation Charlie had finally been referred to John Radcliffe Hospital Oxford to see the Craniofacial team, I couldn’t believe after 8 long months we were finally going to get help.
A few weeks later we went to Oxford to meet with the Craniofacial team, it was a very daunting experience as there were about 12 people in the room all from different medical fields, plastic surgeon, neurosurgeon, genetics specialist to name a few.
Within minutes & just by sight & touch Charlie was officially diagnosed with having Metopic Synostosis & put on the waiting list for surgery. Oh & after a quick exam it was determined that Charlie DIDN’T have Glandular Hypospadius!!!!!!
I cried all the way home from the hospital, I know ide always known Charlie’s head wasn’t right but to have the experts confirm your worst fears is something else. Mark was very quiet, he just didn’t know what to say.
So now the waiting began to get a date for the surgery.
I looked at Charlie every single day trying to convince myself that actually he didn’t really look that bad & maybe if we just left him his head would improve with time. It was only just beginning to sink in what he was going to have to go through.
A few weeks later the letter came, Charlie would be having surgery on September 6th 2007. My feelings were so mixed & strange, I felt sick, excited, nervous, every emotion that you could possibly have came flooding through in one go. I also felt a little proud of myself for not giving up but then angry that it was because of me that he was going to have to endure surgery.
Leading up to surgery I wanted to cancel, he didn’t need it, he was beautiful the way he was, I’ll just keep his hair long & no-one would ever tell but then I tried to imagine Charlie as an adult without having the surgery. He wouldn’t be the cute looking baby anymore but an adult with a pointy forehead & possibly other problems as a result of not having the surgery he should have had. So the decision was made & surgery it was.
September 6th 2007
Surgery day had arrived at last & there was no going back! Charlie was now 14 months old & I loved that little man to pieces, there was no way I was going to be without him.
I carried him down to theatre kissing him all the way, no tears from me yet I was holding up well!!
I sat him on my lap, they put a mask over his face from behind & Charlie quietly drifted off to sleep. I gave him one last kiss but this time tears were streaming down my face as I told him I loved him & told everyone to look after him.
It was now completely out of my hands & the long wait started.
The hours dragged, my mind raced, I paced around the hospital for hours as Mark slept which was his way of coping.
I kept counting how long he’d been in surgery, he went in at 08.30am & 4 hours later still heard nothing.
Then one of the nurses came to tell me that he was still in surgery & although it was going slowly Charlie was doing well.
Finally at 13.50pm I saw a nurse walking towards me with a smile, it was over, he had made it, my brave little man had made it & I couldn’t wait to hold him.
I can’t quite explain how I felt when I saw Charlie for the first time because it was such a mixture of emotions but the main one was WOW! His forehead was perfect, he was fast asleep & looked so peaceful. There were no bandages, no blood, his hair had been washed, he just simply looked amazing & it was right at that moment when I just knew we had 100% made the right decision.
The next four days were hard, Charlie swelled up quite a lot & a line was bothering him in his groin but it wasn’t long before we were starting on our journey home & I couldn’t wait to start being a normal happy family without the worry of surgery looming up.
It took a long time for all of Charlie’s swelling to go down completely & a few weeks for his scar to heal up.
I remember taking him out for a walk the day after we got back from hospital & popped into the local chemist. The lady behind the counter who always talks to Charlie was chatting away to him when she asked ‘Has he has a little accident & bumped his head?’ (She could see a tiny piece of his scar through his hair). The whole chemist were totally amazed when I told them what he’d had done because you just couldn’t tell.
Charlie will be 4 years old on July 5th & he has simply amazed me from start to finish. His journey has been tough at times & was definitely a struggle to get there but I say to all you parents going through the same thing, don’t give up & don’t ever doubt yourself, fight for your little ones as I fought for Charlie.
Charlie is an inspiration to me, Charlie is my Hero.
If you got this far thank you for reading, I hope in some small way it has helped x
Jacqui - mummy to Charlie, Metopic cranio & Harry (no cranio)
Orl
Aidan 9/8/2000 Camden 7/29/2003 Ian 7/29/2007 - Upper end "Mild" metopic. Surgery 8/27/08, Dr. Fearon, Medical City Dallas. We're on the other side!!!
