Spina Bifida awareness- What I know now.

I was asked a series of questions - Well honestly I was grilled--- by a friend of mine who wanted to put together a Spina Bifida post for her blog. Here is our interview..... 

How far into your pregnancy were you when the doctor informed you there was a problem with Carson?    

 ----  32 weeks

Did he actually say there was a problem, or just indicate a need for further testing on your baby and what was your initial reaction to this?

 ---My Ob detected what he thought to be a cyst on myself- possibly a ovarian or uterine cyst. He said those are fairly routine but I can’t rule out for certain that the cyst is not on the baby so I am going to send you for further testing. 

 

What was your immediate reaction to being told Carson has Spina Bifida?

---- shocked, scared, sad, mad, hurt, confused, couldn’t breathe.

Do you recall if you noticed, at the time, what your husbands’ reaction was?

----Pretty much the same as mine.

I know you did internet research into Spina Bifida after learning Carson has it.  What was your emotional state as you learned what it was and what it could entail for him?

----Some info, helped me relax while other info scared me for. It was a Russian roulette game with info.

I know you’re both Christians, do you feel your relationship with God was affected by these circumstances that were occurring at the time? 

-----I would say that I’ve realized more how much He is in control and not me.

What about your marriage relationship, how was it affected at the time?

---- we have a very strong relationship and this really didn’t seem to help/hinder. We just stuck together, leaned on each other, cried together, prayed together, but also laughed together and focused on what really mattered.

I know when Carson was born, they insisted on a C-Section birth in order to reduce as much trauma to his little body and spine as possible, were you able to see him immediately after his birth? 

---- It was about an hour after his birth before I was able to see him. He went straight to the NICU and I was transported to recovery. I did’nt think I would get to see him till the next day since he was to be transported immediately to Childrens… I had to stay at Hollywood Pres. for 24 hours and recover. However, while I was in the recovery room I overheard the nurses talking. One nurse kept asking about moving me out into my room … she said I was ready and they needed the spot in the recovery for another patient. This other nurse adamantly told her that I was not moving anywhere till I got to see my baby. He was on his way to see me and if we were waiting. I quickly called out to her and ask if I had heard her correctly. She said, oh honey yes, you are gonna see your baby. I squealed!!!! Sure enough about 30 mins later they wheeled him into the room. He was in a transport incubator. I cried with joy. He was so perfect. They let me reach my hand into the hole and touch him. I just stroked his face over and over and prayed for him. They stayed for probably five minutes then he had to transfer. It was amazing!!!!

Do you recall your emotional state at that particular time?

-----overwhelmed…. so many emotions I can’t even explain it. Joy, wonder, anticipation, fear, love, exhaustion,….

 Did you, at any time immediately after his birth, consider all the things you and your new family would be facing in dealing with Carson’s Spina Bifida?  Can you tell us some of what was going through your mind at the time?

-----Not really. His birth and seeing him made me just want to see him more, hold him, and take him home. I was worried about him in some ways but also just felt a perfect peace that God was taking care of him.

I know that there have been some physical difficulties for Carson, he had a broken leg immediately at birth and it’s broken a couple of times since then.  How fragile are his bones at this time?  Is he able to bear weight on them, yet?

---- His bones are fragile, how fragile is unknown exactly but we have to be very careful. Weight- bearing actually strengthens the bones so we currently do about 30 mins 3 times a week in a mobile stander. The more the better!!!! This is why we need to get his braces so badly. He needs more standing time, but currently he requires a supine stander in order to do that. We cant afford to purchase one so I have to take him to therapy and do that, and that’s limited for time.

How much time do you have to spend on a daily basis to work on Carson’s physical therapy; getting him to get up on his knees, working on his crawling, whatever other exercises the therapists have given you for him.  And, how much more difficult is this when you have another son who’s 6 months old and probably beginning to think about mobility, himself?

---- this is hard to answer. Each day is different… Part of that is having a 6 month old, and part of that is just daily schedule. Also some days Carson seems willing to work and other days he just doesn’t. I’ve learned when to push him and when not to push him. pick my battles- I guess. I’d say on average we spend 1-2 hours a day on physical  therapy activities.

 
Give me your best piece of advice for women facing the birth of a “disabled” child and name three web-sites you think would be good places for them to go for support and/or information.

----It’s gonna be fine. Your baby is a precious, amazing, and special gift. There’s nothing that is going to change that. Love is not based upon physical expectation. Do not grieve or fear, just trust in the Lord and His plan. Don’t lose sight of the great blessings you  do have. Cherish them, and search for everyday wonders, and miracles.

---- As far as websites go it would depend upon your unique situation. There are online support groups for everything now of days. I recommend finding friends who understand your situation… it’s been one of my biggest blessings and comforts.

Try babycenter.com, facebook, or Parents.com.