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

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

Caleb :: Child with Spina Bifida

In the summer of 2004, Glenn and I decided it was time to start a family. I had actually been ready for a baby for some time but Glenn wasn't quite there yet. I was thrilled when he said he was finally ready and I immediately made a doctor's appointment, got off the pill, and started taking prenatals. I was ready!

In December of 2004 I got pregnant! I remember seeing that faint pink line while standing in my bathroom and I just cried and cried. Absolute joy. I took 3 more pregnancy tests just to be sure! There was no doubt, I was pregnant.

Somewhere around 15 weeks, I went to the doctor to have blood work done. I didn't think anything of it, it never occurred to me that something could be wrong. The blood work came back "concerning" so I was sent to a perinatologist for further testing. I was about 17 weeks pregnant when we found out that Caleb had Spina Bifida and Hydrocephalus. I remember sitting in this little office with Glenn and the "genetic counselor" came in with this book and she turned to the section on Spina Bifida and read aloud to us. It was such a blur, like everything was happening in slow motion. The doctor did an ultrasound and showed us the opening in Caleb's spine and how the ventricles in his head were enlarged. He told us that our son would likely have significant cognitive delays, would not walk, have no quality of life and might not even survive. And in the next breath, he offered termination. We were offered termination several times and repeatedly told that we had to make the decision quickly because I was almost halfway through the pregnancy. Well, that was never an option for us and I quickly switched doctors. I remember that day so well, like it was yesterday. I will never forget March 22, 2005. I felt like my world was falling apart. I remember sitting on our couch, just sobbing and telling God that I couldn't do this, that is wasn't fair and that I didn't want this for my baby. I was mad at God for about a day and then I realized that I needed Him more than ever and that there was no way I could deal with this without Him. People always say that God never gives us more than we can handle, but I don't think that is true. I think we are often faced with situations or circumstances that we can't deal with, at least not without Him walking beside us and sometimes even carrying us through it.

Caleb was born on August 9th, 2005. I had a scheduled c-section so all the necessary medical professionals were ready to meet Caleb's needs. I didn't get to hold him, I only got to see him as they wheeled him by me. There is something so unnatural about that, not getting to touch this life that has been in you for 9 months. Caleb had his back closure and shunt placement when he was only 6 hours old. Poor Glenn had to deal with that pretty much on his own because I was recovering from my c-section and pushing that morphine drip button every chance I could. Caleb was in the NICU for 13 days. Probably the hardest 2 weeks of my life up to that point. Glenn and I would spend 7+ hours a day by his bed, talking to him and holding him. I hated everything about him being in the NICU. I hated feeling like I had to ask permission to hold my own baby. It was a joyous day when we got to bring him home.

This picture was taken right after Caleb was born, this was the very first time I saw him.

This is following Caleb's surgery. You can see how large his head was due to the hydrocephalus so the shunt placement was an absolute necessity. It was amazing how quickly the shunt worked, his head started getting smaller and smaller. Thank God for the man who invented the shunt!

I just think this picture is so sweet.

Finally Home!

So that pretty much sums up the start of Caleb's journey. It is now a 6 year long journey and one that I feel so blessed to be a part of. We have certainly had many ups and downs. Spina Bifida is very complex and it affects so many aspects of Caleb's life, not just his mobility.


Caleb is now 6 years old and in Kindergarten. He is doing things we were told he would never do. He walks with AFO's and a walker. He also uses a wheelchair for longer distances because his legs do get tired. He loves watching NASCAR and Monster Truck videos. He loves to do crafts. He loves to read and he is really a fantastic reader. He loves to color and write and, for some reason, he is desperate to learn cursive (he has to wait until 3rd grade for that!) He plays baseball through the Miracle League and he absolutely loves it. He is a wonderful big brother to Benjamin.



You can't help but smile looking at this boy. I have days of sadness, times when I feel sad for him. But then I remind myself that Caleb isn't sad. He's not unhappy at all. If he isn't sad, then why in the world should I

be? Life won't always be easy for him, but life isn't always easy for any of us. This kid is leaving a mark on this world and the world is better for it.



Caleb is absolutely amazing and an inspiration to me. I am in awe of all the things that he has accomplished. He absolutely blows me away and brings me so much joy. I thank God on a daily basis for blessing my life and trusting me and Glenn with Caleb. God must have seen something in me that I didn't see in myself because He knew that I could handle this (with His help of course). God gives me a peace that I wouldn't have otherwise. Our lives would be so different if Caleb didn't have Spina Bifida, I can't even imagine things any other way. I think about all the wonderful people I have met that I wouldn't know if it weren't for Caleb. My life has been touched by so many other moms that share the bond of having a child with SB. I don't walk this road alone and that makes all the difference.


Check out their blog at Blessings Beyond Measure

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

Jeanne :: Adult with Spina Bifida

Hi! My name is Jeanne Knapp. I am 35 years old and I have a disability called Spina Bifida. I can walk with a quad cane for the most part but I use a power chair, manual wheelchair, or a walker for long distance. I walk with my knees bent so my knees started hurting in 2002 after I had worked for the Shawnee Mission School District for a year which is why I started using wheelchairs, etc. I have no braces on my legs but I do have inserts in my shoes so I have to wear shoes that are big enough for my inserts (a women's size 6).


My insides are the parts of me that have been affected by SB the most. I have nerve damage to the bladder, kidneys, and intestines. I have a shunt in the left side of my head which is a small fiberglass pump that drains excess fluid from the head (a condition called hydrocephalus) but my shunt probably isn't needed anymore. I haven't had any problems with it since I was 5 or so.

Even with all of my problems (irritable bowel, knee pain, etc.) I accepted Christ as my Savior at age 4 or 5 and God had seen me through all of them and given me joy. I still live at home with Mom and Dad and have been surrounded with loving, supportive family and friends. I was able to get through K-12 and graduated with honors from high school and college (two college degrees: associates in applied science with an emphasis in business office management and a bachelors in the area of early childhood special education).


God has seen fit to give me opportunities to date and have as much of a normal life as any single lady would have as possible. I would like to get married and raise a family (adopting kids, not having kids naturally due to the health issue I deal with). However, if God does not want me to get married then I will try to be content with whatever God allows me to experience in life.

Jeanne's blog is at Jeanne's Life with Spina Bifida

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Thank you for sharing your story Jeanne! We still need more stories, click here to share yours!

Madi :: Child with Spina Bifida

Three years ago I was 22 weeks pregnant and sitting in an ultrasound room waiting to hear if our newest blessing would be a boy or a girl. The nurse told us we were expecting a little princess, and we couldn’t be more excited! We already had an amazing little boy, Conner, and now we would have a little girl too! She also told us she saw some abnormalities, but since the doctor wasn’t there, she sent us home. We weren’t too worried about what the nurse found and just brushed it off. The next morning I got a call from the ultrasound doctor, and that’s when our lives got thrown upside down. He explained that Madi had the lemon sign, hydrocephalus, and that they couldn’t find some areas of her brain. The doctor refused to tell me what the results meant but referred us to a specialist. The specialist’s office said they couldn’t get us in for a month, and I was devastated. I couldn’t imagine going an entire month without knowing if my little girl would be ok, it was terrible! Thankfully our midwife was able to get us in sooner by finding an appointment at one of the specialist’s other offices, but I couldn’t wait that long without knowing what was going on. I was so afraid that Madi wouldn’t be able to make it full term and that I would never hold her in my arms. I felt so scared and alone. I cried, and cried, and then cried some more. It was awful. I prayed and told God that I could handle anything He threw our way, but that I just wanted to be able to hold her in my arms. I started searching online and came to the conclusion that she had spina bifida. I had never head of spina bifida before and had no idea what it meant, but felt better knowing what was going on.

When we got to the specialist’s office and had our level two ultrasound, the doctor confirmed what was seen in the level one ultrasound. He asked me if I knew what spina bifida was. I told him that I had looked online and had already determined that Madi had spina bifida. He asked us if we wanted to know our options and we told him that we loved our little girl just the way she was and that for us the only option was to give her life. He never pushed us, and for that, I was thankful! He told us that she had a type of spina bifida called myelomeningocele. He said that she actually did have all the areas of her brain, but that some were underdeveloped. He told us that many times other areas compensate for the lesser areas, and that she would most likely have average or above average intelligence. He explained that Madi had a pretty high lesion level and that she would most likely need a wheelchair. She also had a clubbed foot. Most importantly, though, he said that Madi had a great outcome and that there was no reason to think she wouldn’t live a long and happy life. I was SO relieved!!

After seeing the specialist we were referred to a neurosurgeon, a neonatologist, and were given a tour of the NICU at the local children’s hospital. We asked a lot of questions and did our best to prepare so that we could give Madi the best start at life. We talked to the neurosurgeon about the birth we wanted (we were told we had to have a c-section), about what to expect after she was born, and asked about a million other questions. He was very reassuring and was great about answering all of our questions.

At 36 weeks, they decided to induce us. Madi’s fluid levels were getting pretty
substantial and they were afraid that if they didn’t take her soon we would be risking long-term damage. We went in to have her, but she had other plans. After 36 hours in the hospital, 3 rounds of cervidil, a failed attempt at a Foley bulb, and very little sleep,she wasn’t budging! They said that we could have another week or a c-section, so we opted for another week (just as a note… traditionally they tell moms they need a c-section because it’s safer. Our neurogurgeon showed us all of the research and said that there was no proof that a c-section caused less damage or that it was better for the baby, even though Madi had the ‘open’ form of spina bifida. He said if her sack ruptured, it was no big deal, because he would be rupturing it anyway. We opted for a natural, vagnial birth so that I could be released quickly and be there with her during her surgery) When we went back at 37 weeks I had progressed over the span of the week so they started me on pitocin. Six hours (and about 4 pushes) later, she was here! She was so beautiful with a full head of dark hair and we were instantly in love. I got to have her on my chest for a while before they had to take her away, and I was in Heaven!! I spent that night with her in the NICU and the next morning she and David took an ambulance ride over to the children’s hospital. I got discharged shortly after and met up with them. Madi had her first surgery where they closed her back and inserted a VP shunt. Two hours after surgery I was able to hold her (with the help of our great nurses) and nurse her. She did so great! I requested a private room, which we got, and I was able to stay with her day and night. She recovered wonderfully and we were out in 5 days, which the hospital said was a record. I was so excited to be going home!


Life with Madi is a little different than I envisioned. I didn’t see therapy appointments, extra doctors appointments, surgeries, and wheelchairs in our future when I was dreaming about life with my new little girl. The truth is, though, that life is so much more amazing than I ever imagined too. Every time Madi accomplishes something that the doctors said she wouldn’t, my heart fills with pride. When I look at Madi, I don’t see the leg braces or the wheelchair. I don’t see the shunt or notice the lack of movement in her legs. When I look at Madi I see this amazing little blessing that is absolutely perfect. I see a little girl that has a magnetic personality; one that lights up a room as soon as she enters. I see a little girl who loves her life and who finds a way to accomplish any and everything she puts her mind to. When Madi laughs and smiles, everything is right in the world. She is so full of love and has added so much to our lives. I cannot imagine life without her.


In hindsight, I wish I would have saved myself all those tears and all that stress and, instead, would have just enjoyed my pregnancy. It’s funny to think that we used to be so afraid of what spina bifida would look like. Now we know just what it looks like; it looks like our beautiful daughter. We aren’t afraid of spina bifida any more. In fact, we are so not afraid of spina bifida that we are working on adopting a little girl, Ramya, who has spina bifida, from India. We know just how to help her and are looking forward to the day we can bring her home.


If you would like to read more about Madi, our adoption, or our family, please visit our blog at www.aworthyjourney.com. Our hope is to share with new parents what we wished we had known when we first found out about Madi; that one day the spina bifida won’t matter and that all that will matter is the immeasurable blessing that they were given. A blessing that will fill their lives with joy, love, and pride beyond what they could ever image.

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