My story: raising awareness for adults with Spina Bifida.

This one isn’t going to be easy to write and I’m sure not easy for you to read. It’s my story, or at least part of it.  It’s the part of my life I chose to share during my recent Teal on the Hill trip to help raise awareness of poor healthcare for adults living with Spina Bifida.

The night before our meetings on Capitol Hill was a sleepless one for me.  Believe it or not I hadn’t really thought about what I would say to each of these people.  I wasn’t sure how I would feel spilling the beans to total strangers. During our first meeting I didn’t really tell my story. I let Jennifer (the rep from Massachusetts) take the reigns.  She talked a lot about being an adult with Spina Bifida and how the quality of care that she is receiving now is not as great as it was when she was as a child.

You see, as children with Spina Bifida her and I both got amazing care (expensive, but amazing)  We both were set up with regular visits at clinics in our home states.   Because Spina Bifida really effects the whole body these clinics got a team of over a dozen different doctors together to work collaboratively for their patient.  I remember going to my clinic at Dartmouth Medical Center in Lebanon, NH feeling really special. Like, all these people are here for ME!  We were an awesome team! However as adults Jennifer and I both agree the quality of care is not the same.

There are about 16 clinics for adults living with Spina Bifida in the US and none of them are in New England.  My hope was that my story would raise awareness to the issue and hopefully bring more quality care to NH someday (or at least a little closer)

The Senators and state representatives weren’t surprised to hear that we got quality care as children.  It’s very common in every state that a child with Spina Bifida go to one of these clinics.  But, what happens when that child turns eighteen and doesn’t live in one of the 16 states with an adult clinic?  Well, they were shocked to hear this.

MY STORY

When I turned eighteen I was told I was too old to keep going to the clinic in Lebanon, NH.  I was told that they focus mostly on children since that is when kidney development is most crucial plus the clinic was shutting down completely due to a lack of funding.  So, I was left to find new doctors (with the help from my parents, of course) to hopefully be provided the same quality care I had been receiving. The unfortunate thing is a lot of doctors are not familiar with adults living with Spina Bifida.  It isn’t until recently that patients like myself are living as long as they do.  We managed to find me decent care for regular visits and exams that helped battle the normal infections and preventative care.  But…….

Now fast forward to 2005.  I had just graduated from college (21 yrs old) and found out I was pregnant (holy crap).  Admittedly not planned and not that excited about it at first but, I knew I was responsible enough and quickly fell in love with the idea of being a mommy!  About 3 months into the pregnancy I started encountering some major problems.  Basically my bladder and kidneys stopped working.  Something was blocked by the baby’s growth and urine was not able to get from my kidneys to my bladder.  It is really bad (and not to mention painful) to have urine just sit in your kidneys.  The only way to fix this the problem was to have two tubes (nephrostomy tubes) put in to each kidney through my back to release the build up of urine into two bags. It wasn’t really fun to spend my entire pregnancy carrying around two small bags of my own urine (gross).  While this helped, it still didn’t eliminated infections from coming and the (stupid) tubes would get blocked and have to be replaced over and over again. Long story short, I made it to month seven of the pregnancy only to be told during a routine checkup for the baby that there was no heartbeat.  The news was devastating.  I couldn’t believe that after all I had been through I wasn’t going to have this beautiful little boy to show for it. To make it all seem worthwhile.

Through this whole ordeal I really wished I had my team of doctors.  The care during my pregnancy was so disjointed and unorganized.  None of my doctors really talked to each other and I was prescribed so many different things. Sometimes I felt like it wasn’t even really clear as to whom I should call with an issue.  If I had a more coordinated care maybe things could’ve been different.  I can’t help but wonder.

So there you have it – my story. It certainly caught their attention and had them shocked at the kind of care I had received during my pregnancy.  I left my meetings feeling like I had raised more awareness for adult women living with Spina Bifida which was our mission.  I left feeling like I could conquer the world!

By the way, His name is Xavier William Lovering-Lopez.  He was born on November 3, 2005. I only got to hold him for a little while but he is forever in my heart. He made me a stronger woman and for that I am grateful. I know that everything happens for a reason and I have made peace with this chapter in my life.  I tell Xavier’s story not for sympathy but to help raise awareness for this very subject.  It is so important to me that Xavier be my drive behind this whole blog. That his name not go unnoticed but is heard where ever necessary in hopes that another woman with Spina Bifida does not have to go through the same thing.  He was born into this world this way for a reason and I think I have finally figured out why!

 

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P.S. I plan to share the stories of others affected by Spina Bifida. I truly believe this will be the best way to raise awareness, educate people, and help other feels like they aren’t alone!  So, whatever your story is please head over to my “share your story” page and share with us!

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