Thursday, September 21, 2006


Below is a recent post from a fellow CHARGE mom. She is an absolutely fabulous, dedicated and loving mommy to her three children - Meagan, a 20 month old with CHARGE, her healthy twin sister, and an older brother. As you can imagine, this mom has her hands full! But fortunately she says her husband is truly incredible and a major support.

Meagan has been having some complications recently with her brain and there has been a lot of confusion on what to do. This obviously has been frightening for the family. She had brain surgery a few weeks ago and the recovery was not going very well. My heart absolutely broke when reading this post on the latest news, and I wanted to share with you so that you could keep this precious girl in your prayers. Thank you everyone!

As you all know, Meagan has been very sick as of late. We finally took her back to the ER Monday morning after talking to her neuro surgeon's staff. Luckily, while fighting for Meagan on the phone, I was passed off to the Nurse Practitioner who took care of us in the PICU after her last brain surgery. She agreed that something was not right.

Once in the ER, and upon inspection of her "bubble" (which was now larger), she alerted Meagan's neurosurgeon that she was suspicious the patch had broken, or a suture had torn in turn leaking cerebral spinal fluid. We were admitted into the PICU that day and an MRI was ordered of her brain.

It was the news we were dreading. Meagan's hydrocephalus was now out of control resulting in her brain being pushed against her skull. There was so much pressure from the hydrocephalus, that her ventricles were remarkably larger, forcing the water around her brain out (to make room for the brain), and her Chiari was worse than ever because it was again being pushed down the spinal column. The "bubble" was the fluid from around her brain looking for away out.

Dr Moss came in Tuesday morning and gave us the grim truth. His words were that Meagan was in trouble. He said within the next couple of days, the patch would tear open and her brain (specifically her cerebellum) would be forced out trough the opening. He also said that a week from now, we wouldn't be having this conversation because if Meagan would have made it that long, he would be wheeling her into the OR so fast that it would have left Kevin and I spinning in her room not knowing what had just happened.

Her vomiting and nausea were direct results of her hydrocephalus being out of control. The only option we had at this point was to shunt her. He was going to give us the night to digest this information before we signed the consent forms, but Kevin and I realized that our backs were against the wall. The only thing we could do to save her was to do this surgery.

The surgery was bumped up last night after a bout of vomiting from Meagan, and after Meagan's nurse inspected her "bubble". It was now firm to the touch meaning that the bovine patch that was placed in Meagan was about to burst. We signed consent forms immediately, and she was in the OR within an hour.

The surgery went well, and was successful. The "bubble" had softened by the time she was sutured back up, and by the time I left the hospital at 10 PM, it was gone. A cat scan was done this morning to make sure the shunt was in the correct places (and it was), and it showed that her ventricles were already shrinking.

Within the next couple of months, Meagan's ventricles will be of normal size. This should allow the water to return around her brain and her cerebellum to return to it's original corrected position. The shunt is in her right ventricle, and runs down her neck into her abdominal cavity. At the moment it is not pretty, as Meagan has lost 4 pounds (which she couldn't afford to lose in the beginning) and you can see the path the tube runs down. When she cries, it looks like she has a garden hose running down the length of her body.

But, we have seen a complete 180 in Megan's behavior and tolerance. An hour after surgery, she was playing! I type this with tears in my eyes because I haven't seen my little girl smile in weeks. She is home tonight, and was greeted by some very excited siblings and grandparents. She seems to be very comfortable and happy to be home. There are definite risks with having a shunt, but they are minimal in comparison to the beautiful life it saved.


blessing4 said...

I know what it's like to have a small child go through that kind of surgery, because I,too, have a son who had to have a shunt put in when he was 2 weeks old. My son was born 3 months early, and because he had a ventricle bleed he had to be shunted. There was a blood clot at the base of his spinal column, and because of that the spinal fluid couldn't go down the spinal column and his head was growing 1cm a day. The doctors told us all about the complications that could occur with the shunt, but to this day he has never had a problem. It's never gotten infected, never gotten clogged, and he's never had to have another surgery to have it lengthened. He is now 21 and the last time he had an x-ray his shunt tube was about in the middle of his chest. I pray that she won't have any complications with her shunt.

Traci said...

Consider it done...thanks for sharing this story!

elle said...

wow wat amazing things we all have to go through argh no wonder ur stressed LOL