Wednesday, June 20, 2012

Special Needs Spotlight - Madi

Let me just start by saying that I love kids with Spina Bifida.  You know how some people have a special place in their hearts for Downs Syndrome kids or kids with Autism?  I love the ones with Spina Bifida.  When I was in college I taught swimming lessons and there was this little girl in my class who had Spina Bifida.  She was so cute and so expressive and so loving.  After one session, her mom decided she'd do better with one-on-one private swim lessons...but they had to be with me!  She went from screaming to let go of her mom and get in the pool, to being excited to see me, floating independently on her back, and even putting her face in the water before we were done!!  Man!  She was the cutest thing ever!!

Anyway, reading about Madi and telling you about Tanner, just really reminded me of my swim lesson angel, because the pictures and stories about Madi and Tanner sound just like her!!

Madi also has Spina Bifida, and it was also discovered before she was born, at about 22 weeks).  Coincidentally, she also has a brother named Connor!!!  But Madi's brother is older.  Sometimes I think that it would have been easier to find out Sadie was going to have special needs before she was born, but after reading Madi's mom, Jamie's, story, I'm not sure that's the case.  I think you grieve for what you lost no matter when you find out.

Jamie said she cried a lot in the beginning when she found out about the Spina Bifida, but that looking back, she feels that she wasted so many tears.  She is so blessed by her child and believes that she was made perfectly the way God wanted her to be made.  She says that everyday Madi brings her more joy than she could ever imagine, which is how all parents should feel about their children!

Jamie has a blog called A Worthy Journey, and I went and read her birth story with Madi.  What a roller coaster!!  She was sort of induced and then sent home for another week before coming back and being induced again.  It is common for children with Spina Bifida to also have Hydrocephalus, which causes their brains to swell and their heads to be large.  This, as you can imagine, raises the C-Section rate in kids with Spina Bifida.  However, Jamie was determined to have Madi naturally, so she was induced early and was successful in giving birth to her little angel.

Madi has a shunt to treat her hydrocephalus.  Hydrocephalus is essentially "water on the brain", meaning that her cerebral spinal fluid does not cycle and get absorbed on it's own, and therefore, collects in her brain/ventricles.  The shunt takes this fluid from her brain/ventricles and drains it through a tube in her tummy.  This type of shunt is called a VP shunt, standing for Ventriculoperitoneal shunting.  Shunts were invented in the 1950's by a man who's son was born with spina bifida and hydrocephalus.  He saw the value in designing an internal shunt and worked with his son's doctor to creat one.  Before then, most people with hydrocephalus died.  Now, those with hydrocephalus can live a normal life and have a normal lifespan, as long as they have a shunt.

Despite Madi being unable to walk or stand without assistance, her family does not consider themselves unfortunate.  They have adjusted their version of normal and consider themselves blessed.  Madi sees several doctors on a regular basis, but that doesn't interrupt their schedule too much.  She is also catherized 4 times a day to keep her from having to wear diapers.  She is still able to play and have fun with her brother and her friends.  And soon Madi will have a sister too, her family is in the process of adopting another little girl with spina bifida from India.

No matter what kind of special needs a child may have, most of their parents say the same thing; please don't feel sorry for them or ask them how they manage with such a difficult life.  The thing is, every child is challenging in their own way.  I think Madi's family is a great example of rising to the challenge of Madi's special needs, they are so comfortable they are willing to accept another child with the same needs.  What an amazing show of love.

I hope that everybody reading this can learn something from Madi and her family, and I encourage you to follow their journey by reading their blog!


  1. Thanks for sharing our story!

  2. hey i have hydrocephalus too., except for i have a VA shunt, it goes into my heart. i wish her the best of luck (: