Madelyn... so far

[Maddy's Mom]

The doctors were concerned with the shape of Madelyn’s head early on in my pregnancy. During one of my first level 2 ultrasounds her head appeared “lemon shaped”. The doctor ordered an amniocentesis and mentioned Edwards syndrome, which I researched and found heartbreaking information on. Thankfully, the amnio came back normal, but there still was the question about the shape of her head. It was the next ultrasound that introduced us to the word “craniosynostosis”. I was told there wasn’t anything the doctor’s could do before she was born, except watch her growth in utero. And they did. There were regular ultrasounds and 3D ultrasounds throughout the pregnancy as well as fetal MRI’s, fetal echocardiograms, genetic counseling and trips to Philadelphia to consult with specialists.

On February 6^th, 2008, Madelyn Martin Webber came into the world crying at 8:04pm weighing 6lbs 4oz. It was a normal birth and she passed all of the newborn tests with flying colors. She had a sweet little face, mostly resembling her father, and a bumpy ridge running up the middle of her high forehead. We were set to see the craniofacial surgeon a week after her 1 month birthday. On March 4th, I was driving on the NJ parkway to visit family. Maddy and I were by ourselves and she was not happy about being in her car seat as usual. When her crying stopped I could hear her gasping for air. I was near an exit and got off in search of the nearest shoulder. By the time I was able to pull over and jump in the back seat Maddy was blue. I called 911 in a panic as I had not yet taken the CPR course. While I spoke to the 911 operator, she began to take breaths again and her color became pale instead of blue. She ended up at Jersey Shore University Medical Center where they did a CT scan and determined there was pressure on her brain. She needed to be taken via helicopter to Children’s Hospital of Philadelphia (CHOP) late that evening. Her father and I made that trip by car and met Maddy at the Pediatric Intensive Care Unit. On the first day she would be poked and prodded with bloodwork, EKG, Echocardiogram, MRI, eye exams, genetic testing. The neurosurgeon told us she needed surgery right away to open the metopic and both coronal sutures and relieve the pressure on her brain. Surgery happened the next morning on March 6th. She came out with a zigzag scar over her head from ear to ear, on a ventilator with an IV in each of 3 limbs as well as in her neck… something I thought I was better prepared for since I had already seen pictures on this site as well as some others. I guess you can't prepare yourself to see your own child that way for the first time!

Since then, she has recovered nicely. We’ve been back to CHOP to follow up with the craniofacial surgeon and the neurosurgeon, as well as to Princeton to see an ENT. She’s also seen a cardiologist in addition to her regular pediatrician visits. In the coming months we will see the ENT again (she was also recently diagnosed with laryngomalacia, which is the probable cause of the breathing incident on March 4^th), the ophthalmologist (to ensure there is still no pressure on her brain), the geneticist (we just found out last week that the tests show she has Saethre-Chotzen syndrome), the craniofacial surgeon, as well as another CT scan all at CHOP. Her next surgery is tentatively scheduled for Sept. 15^th barring any complications before then. A 3^rd surgery is likely approximately 6 months after the next one. Past that, we don’t know yet. The craniofacial surgeon says he will follow her growth up to age 18 and will operate as necessary.

We are just beginning to learn about Saethre-Chotzen syndrome, but as I read the stories you all have written I am filled with hope that she will live a happy life. Maddy is a work-in-progress, as we all are, and we are blessed that she has chosen to share her life with us.

[Jenny]

Welcome Maddy's Mom! It sure sounds like you've had a rough ride already! I pray that Maddy continues to get better! My daughter and I are both bicoronal. I find it unusual to have that many surgeries they have scheduled for her. Can you go into detail about that? Most children only have 1, and i know of a couple children who have had multi-suture closures sometimes had two. At any rate, it all sure sounds scary!

[mckennasmum]

welcome, and what a busy time you've had, great to read your story!

[Maddy's Mom]

Thanks for the welcome!

They way the craniofacial surgeon explained it is that her browline is so constricted that he doesn't think he can pull it out far enough the next time. He wouldn't touch her until she was at least 6mos old because her bones are too soft. He's trying to stretch her until Sept. hoping she won't have too much pressure again. They've also mentioned the possibility that she may need a shunt. I hope not.

[fullhouse3b2g]

I'm glad you found us! My little guy, Isaac, has laryngomalacia as well as trachealmalacia...I know how scary they can be.

I'm looking forward to getting to know you here!

[Alison]

wow! that sounds real scary! i hope everything goes well! Im glad you found this site, everyone here is so helpfull!

[Pocket]

You have had quite a journey so far! Welcome to this great site - it's a fab place. My three year old son Patrick is two weeks post op for surgery to correct metopic.

[charliesmummy]

Ive just read your story & what a journey you have already had. You have found a great site here with the most wonderful people so Welcome & i look forward to getting to know you and lovely Madelyn x

[clare]

just wanted to say hi and welcome to crani mums its a wonderful place to be.

[Candice]

Wow, what an amazing story, thank you for sharing it with us!!! WELCOME TO CK!!!!