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How to Deal with the Diagnosis of Having a Child with Spina Bifida

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We don’t usually get to choose our family. We don’t get to choose our parents, our siblings, or our extended family no matter how much we would like that option at times.

I so badly wanted to be a part of the Huxtable family as a child. Do you remember “The Cosby Show?” Dad was a doctor and mom was a lawyer. They always had the best ways of teaching life lessons to their kids. They were always making each other laugh and spending quality time together.

I was convinced they were a real family and even after I knew the truth I continued to believe they were real. I wanted to wholeheartedly believe that a family like that existed. And I wanted to be that family someday.

As children and teenagers full of hope and big ideas, we dream of what our own families will be like. We dream of what our occupation will be, who we will marry, and how many kids we will have. We even think about what kinds of pets we will have and how many.

What we usually don’t dream about is having a child with spina bifida (or any kind of disability for that matter). We don’t dream about raising a child that will never be like his siblings. We don’t plan for the difficulties that lie ahead for our little one and for our family as a whole.

And once we get the diagnosis that our child will never be “normal,” we don’t dwell on the blessings of having a child with spina bifida. At least not at first.

Give Yourself Permission to Grieve

We are told that when we lose a loved one to death the path to healing is by going through a grieving process. In the same way, as new parents to a disabled child, there is a path to the new way of life for your family. It is a way of recognizing that your life and your family’s life will have a new normal.

1. There Must Be A Mistake (Denial)

You have just received news that this precious baby will face many difficult and heart-breaking challenges in life. And it’s not fair.  “Why did this happen? Could there be a mistake in the test? What could I have done to prevent this?”

I remember the day we were told our son appeared to have spina bifida and that we needed to be referred to a different hospital for another opinion. We were already on pins and needles the day of the appointment. My OB had personally called me a couple of weeks beforehand to give me the blood test results for a protein produced by the baby. Abnormally high levels indicate spina bifida. I remember her telling me the range that it should be in and although the levels were considered high, it was at the lower end of the high range. So, it was a good possibility the test was not accurate.

Although we knew there could be this potentially bad news, we wanted big sis to meet her baby brother. She had waited a long time to be a big sister. And maybe in the back of my mind I thought if she was there, it would bring us good news. The ultrasound took f-o-r-e-v-e-r. Then the high-risk doctor told us that it appeared our baby did have spina bifida. He had the lemon-shaped head and a tiny sac on his lower lumbar.

If you've just received the heartbreaking news that your baby will be born with spina bifida, we understand your pain. Check out this article for some encouragement and support!We sat there in shock and disbelief of this realization. At that point, it felt like we were in a bad dream and nothing seemed real. Before being referred to a more qualified hospital, we were asked if we wanted to terminate the pregnancy. I was taken aback by this question. I’m sure it’s just protocol but the OB clinic was housed in a Catholic hospital. How ironic that it’s protocol for abortion to be considered right away after being given devastating news inside a religiously run hospital. I mean we hadn’t even had time to process this information and here we were being asked if we wanted to terminate this precious life.

As I look at my son now and think back on that day, I cannot imagine giving up all hope for him just because he’s physically a little different. To see how he has beat so many odds already is amazing. He continues to astound me every day.

2. My Baby Doesn’t Deserve This (Anger)

It’s a guarantee you will feel quite enraged about this new reality. The unfairness of it all. Why is this happening to your family? Hasn’t there been enough chaos and torment already? First a miscarriage, then your father gets diagnosed with brain cancer. And now this. All within one year. Enough is enough.

A lot of things are unknown during a pregnancy with a spina bifida child. And the doctors can’t predict the future for your child nor should they want to. In the meantime, you have to mentally prepare for a lot of scary things that could happen. Will the baby have any feeling in his legs and feet? Will he have to be catheterized? Will he need a trach or a shunt?

It’s scary to think about the future and normal to feel anger and disappointment that this is affecting your baby.

3. If Only I Had … (Bargaining)

This is where guilt can set in but you have to remember it’s not your fault. You did not willingly cause this to happen. You will have a million “what if’s” and you will blame yourself every time. Don’t allow yourself to stay in this place for long. It’s not healthy for you or your baby.

The best thing you can do besides lots of prayer is have positive thoughts. Say these things out loud and speak them to your child. I used to stand in the shower and rub my belly as I spoke positive words about my son. I know it sounds a little cuckoo and it will feel very uncomfortable at first. But it’s allowing yourself to realize you are not to blame. You are speaking into existence a positive future for your child.

4. What Good Can Come From This (Depression)

You notice other kids riding their bikes and running. And you realize your child may be paralyzed from the waist down. Your baby may never be able to run or ride a bike. At least not like normal kids. The truth hits you hard. Almost knocks the wind out of you and leaves you with tear-filled eyes as you drive down your neighborhood street on a beautiful sunny day.

“This is not fair! Life is so cruel.” With this darkness looming over you, how can you find the good in this situation? It may seem like this dark cloud will last forever as your child will continually face new challenges, surgeries, and countless doctor’s appointments, but I promise the dark cloud will dissipate.

5. This Baby is Perfect (Acceptance)

One thing is for certain. You will love this baby unconditionally and you will realize what a miracle she actually is. She will remind you of this every day as she strives to meet her milestones. You will eventually find peace and acceptance with the fact your child is especially unique. And you will rejoice with even greater joy at the smallest of accomplishments. That milestone of rolling over? It might take six months but boy when it happens, sheer joy!

Your New Normal, Your New Family

Once you have come through to the other side of the grieving process, you start to find the new normal for your life and your family’s way of living. Eventually, you start to see the beauty this new way of life holds. And my how beautiful the view is.

I leave you with an essay so lovingly written by Emily Perl Kingsley. It is called “Welcome to Holland.”

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

One Last Thing

I would like to say along with all the other moms and dads of special needs kids, “Welcome to the family!” You are now a part of a special community that understands your pain, your grief, and your joys that families without special needs kiddos do not understand.

To learn more about spina bifida check out Spina Bifida Association’s website for a ton of resources and information.

What have you learned so far from your journey?

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  1. You put my feelings into words. Everything you said is just what we have been going through. Our daughter is in the VHOP hospital as she just had fetal surgery on out grandson.

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