Wednesday, March 7, 2012

Charlotte :: Child with Spina Bifida

Charlotte Adara was born April 19th 2010 at the University of California San Francisco. We were part of the MOMS Program. Our before story is quite eventful so I think I'll share that before I get to the reason for this post.

We found out Charlotte was a girl on December 28th. The ultrasound tech found something wrong but didn't tell us. They told Matthew and I that they needed to send me to a specialist because they didn't get enough measurements. I had no idea so I went to this appointment by myself. I should have figured something was up when the office they sent me to had to do with genetics and birth defects.... but nothing. Then they did the ultrasound and said there is something wrong with your babies back. And her head has what we call the Lemon sign. They said she has Spina Bifida which I had no idea what it was or what that meant. The doctor was very gracious and explained a few things. She said I had some options. First of all Termination which I said no way. Just to go as is and deliver and go from there or that there is a study being done for this where they go in and close the babies back before they are born. Anyway so much info and I was in shock. They called Matthew on his last day of work as we were planning on moving to VA the next week. He came down cause the doctor didn't think I should drive home in my state. I was definitely in shock. So she gave us some info and the number for the study. We then had like 5 days before Matthew left for VA and I was to move into my parents house while he looked for houses.

It was a stressful 5 days. Anyway Matthew left and I didn't know what I was going to do. But I did call the MOMS people and did the interview over the phone. I felt good about it and so Matthew asked his work if he could telecommute to do the evaluation. They said yes. We got to San Francisco on January 24th had the 2 days of evaluation on the 25 and 26th where we were bombarded with info. The MRI showed a really bad Chiari Malformation. That is what made the final YES in my mind to do the study. If that could be fixed I would do it. Those few minutes after we said yes were crazy waiting to know if we were going to stay for the next 3 months or be going back to VA and AZ. But we ended up staying. Matthew called his work and said he'd be telecommuting for the next 3 months. And they were good with that. What a blessing. We had the 27th all do ourselves and then on the 28th I was at the hospital having surgery. I think I was in the hospital till the 31st. I wanted to get out of there! I hate hospital beds. Anyway we set up camp at the Family House. We enjoyed our time there. We ate at some awesome places. Met some amazing kids at the family house. We were there with another couple that were part of the trial but got chosen for the surgery after. Then I was still there. and Nicole Dyer came. She had her surgery and then I went in to have Charlotte 3 days earlier then planned. WE had my c-section scheduled for April 22 but at my regular visit on the 19th at the Antenatal testing they saw I was contracting regularly and sent me on my way to the hospital. We then had Charlotte that afternoon. She was amazing! Beautiful! She came to earth at 6 lbs 13 ozs at 20 inches long. She was in the Nicu for a week. I think that was only cause we could leave without the VCUG and they only do those on the day she was born. So we had to wait a week to leave.

The Neuro said that if Charlotte wasn't part of the trial that he would have put a shunt in her before we left but wanted to give us the benefit of the doubt to see if she would stabilize. But that wasn't in our cards. We saw the Neuro back in AZ several times and then got the shunt put in May 14. That was a difficult surgery to get through. She looked horrible coming out of surgery. But It saved her life. We got a VP Programmable Shunt. Adult sized. So that hopefully she won't need a new one...

That has been the only surgery for Charlotte She had great leg movement when she was born. All the doctors that saw her were amazed. Her scar on her back looks more like a birthmark then a hole that was fixed. She walks with her walker and does really well just walking holding onto my hand. We just got for arm crutches for her to try out. So far she's not a fan. I'm not sure she'll need them but they are there if she decides they are better then her walker.

Her level is L4-S2. She's got movement all over. She's got KAFOs to stabilize her ankles. We Cath her 4 times a day and she's on Ditropan. At our 12 month evaluation at CHOP they found a Cyst on her upper thoracic spine that we are now watching with MRI. So far so good. Charlotte will be 2 in April. We can't wait to go back to San Fran for the 30 month visit. I just spoke with Rachel there at UCSF and they will accommodate us coming over the holidays and fly us from VA to CA back to AZ to visit my family! Awesome!

Charlotte amazes us everyday. She's so sweet. She's my cuddle bug. She LOVES BABIES! which I'm thankful for as we're getting ready for another one soon. Charlotte doesn't like crawling down the stairs anymore because she wants to walk down them. Scary I know but she won't do it without me. Soon she'll be able to do it herself. She has Physical Therapy twice a month and Developmental Therapy once a month.

I Love my sweet Charlotte. I can't believe anyone would consider ending such a wonderful spirit just cause it will be HARD.

Check Out Our Family Blog at TEAMWEIR.BLOGSPOT.COM

Thank you for sharing Charlotte's story Heather! We still need more stories, click here to share yours!


  1. Hi Heather! Are you by chance Joanna Brimhalls sister??? Your story sounds familiar.. and she lives in my neighborhood =) You and I have VERY similar stories!

  2. I love it! She is such a blessing, Faith is doing good your need to call me I miss u guys