Michigan Diagnosis Stories Fighting for Change

How well do you remember the moment? You looked up and saw a frozen look on your doctor’s face and all of the sudden the whole world stopped and became a blur around you.  A pit that had been sitting in the bottom of your stomach slowly started to make its way up and your head and your neck became heavy.  As your doctor began to explain the situation, your ears started to ring and you could no longer hear anything they were saying.  You sat there, with your hand on your belly, as if touching that baby bump would give you the reassurance  you so desperately needed.

It’s a moment that no parent expects to have. But we all fear.

Hopefully, you were given resources, information, and some form of assurance that temporarily filled the growing pit in your stomach. However, if you weren’t given any of that, you’re not alone. Across our country, upon diagnosis of Spina Bifida, parents are still being told their child is “incompatible with life” or “will not survive his first days” or will be a “vegetable with no quality of life.” All information that no new parent wants to hear.

What if we told you we are working to change what parents experience on that diagnosis day?  What if there was a way to make sure the information parents received was accurate, timely, and included a way to get in touch with the Spina Bifida community…the people with real stories of what living with Spina Bifida is like? What if we told you we need your help to do it. Would you take a minute and help us?

 Maybe you would if you heard these stories…

Deanna Luebbert, regarding Evalyse, now nearly 5. Diagnosis 2012.

Evalyse 2

I wanted to share my story with you to try to spare future pregnant mothers with babies diagnosed with Spina Bifida from the same mental anguish that I endured when I was sent to my high risk pregnancy doctor.

A routine ultrasound at my ob-gyn exposed that something was wrong with my unborn child.  They sent me to get an amniocentesis for accurate diagnosis and also to a high-risk pregnancy specialist.  I’m not going to pretend that I remember word for word what my high-risk pregnancy doctor said because that was five years ago, but what I do remember is that he gave me no options except for one—abortion. I refused right away, in my mind that was not an option that I would even consider.  I was poorly educated about my daughter’s diagnosis that they had discovered through various ultrasounds, but I wanted to know details of what she would be facing.  I asked so many questions about the diagnosis, but the only answer I received was to terminate. The doctors said she would be brain damaged, a vegetable, would never be able to walk. They told me not to be selfish and think about would I would put her through and what a burden she would be to me and my family.  On multiple occasions, he even called her a “water head” because her ventricles were enlarged due to extra water from hydrocephalus.  He offered detailed information for where I could terminate my child since they didn’t do it at their Catholic hospital, yet there was no mention of fetal surgery.  I completely understand how severe Spina Bifida can be, and I appreciate that the doctor didn’t sugar coat anything. But the families of diagnosed children should also be supplied with other available options and especially more current and accurate information with evidence, health criteria, statistics, and support systems.

I will never forget how I felt the day I left that office with nothing but a pink folded piece of paper for a Spina Bifida “Brochure” and a broken heart that was being controlled by something bigger than myself. Even today, it still brings me to tears, and I strongly feel like this could have been prevented.

My healthy, happy, brilliant four year old daughter that did have fetal surgery and walks perfectly fine, thanks me for not following that particular doctor’s orders.

– Deanna Luebbert

Justin Parsons, regarding Dax, now 2. Diagnosis 2015

Screen Shot 2017-05-24 at 2.13.53 PM

Our son was diagnosed with Spina Bifida at 18 weeks gestation. We were sent from a doctor in Livonia to meet with a doctor in Ypsilanti who told us our son was going to be a “vegetable” and never have a chance at a “normal life”.  My reaction was, “Is this lady crazy?” So, we wanted to talk with other doctors that specialize in Spina Bifida, specifically myelomeningocele.

We were referred to a children’s hospital where the social workers there told us the same thing but more in depth… that he will never walk and will be in a wheelchair, he will have major learning disabilities, he won’t live that long, and you’re running out of time to terminate in Michigan…

I asked the three health care professionals in the room which one of them is the doctor that deals with Spina Bifida… The answer was none. Not one person in the room had ever physically dealt with a patient with Spina Bifida.

So, I am sure you have read the same old stuff on the internet that we received. Yes, some of the internet stuff is scary. So, I asked to meet with the actual surgeon that would work with our baby considering the surgeon will know most about Spina Bifida. So, we got to meet with Dr. Garton. I love this man. He was our first ray of sunshine.  One of his first questions was, “what kind of parents are you?” Having two other children, I said, “I have two others (who, at the time, were 11 and 9), and they are still alive and healthy so I must be doing something right.” He said, “Well, that’s the kind of life that this one will have. Yeah, he may not walk but he could, he may be in a wheelchair, but he very well could not be, he may have learning disabilities, and he might not – kids are kids.”  He told us, without a doubt, he will have a lot more doctor appointments than your other kids.

So, in short, something needs to change. Having a child with Spina Bifida myelomeningocele, yes, is harder that my other children have been. Dax is now two and still crawling, but he is very close to walking. We catheterize him when we change his diapers to make sure everything is out. We give him bowel and bladder medication every day, sometimes two times a day. But, other than that, he’s just a kid.  He gets into everything he can reach, wants to explore, and wants to do everything he can.

Help us pass this bill so that other parents don’t make the choice we could have made—abortion based on information that never included the fact that our son would just be a kid with a couple of differences and not a vegetable with no quality of life.

-Justin Parsons


 

You could play a role in these stories. You could help make a change so that no future parents of a child diagnosed with Spina Bifida will have the confusion and fear that Deanna and Justin were faced with.  

Here’s how you can help:

In Michigan, a bill that would directly support all future parents of children with Spina Bifida has been introduced in the Michigan House Committee on Health Policy.  We need your support to get it passed.

This bill, HB 4584,  would ensure that all families of newly diagnosed children with Spina Bifida receive “up-to-date, evidence-based, written information about Spina Bifida” and “contact information regarding support programs and services that may be available to expectant and new parents of children with Spina Bifida” upon diagnosis.  This bill wouldn’t just alleviate some of the fear of a parent who hears “Spina Bifida” for the first time, it would support and provide that entire family with necessary information and tools for raising their child.  

Maybe you don’t live in Michigan, but that’s okay. Chances are someone you know does or by spreading this news on social media, you could connect with someone who does. SHARE this news with them.  Help ensure that no future parent of a child with Spina Bifida is provided out of date, inaccurate information to make one of the most important decisions of their lives.

Calling all Michiganders! CALL your committee members, and inform them of your support for HB 4584.  If you do, you could change the lives of all those affected by Spina Bifida. The vote takes place TOMORROW, May 31st, 2017. Pick up the phone today to share your support with committee members.

Are you a parent of a child with Spina Bifida? Email your story about a less than accurate, out-of-date or incomplete diagnosis story from the past 6 years to the committee clerk to be entered as a testimony in support of HB 4584! Email mweipert@house.mi.gov and be sure to use the subject “Testimony in support of HB 4584”.  

 

 

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