living with sacral agenesis complications

This is the fourth in a series of posts that tell the story of Julie Hemker, a young woman born with a complex birth defect, sacral agenesis, that required 47 surgeries to correct.  Julie and her Mom, Charlotte Schild, are each telling the story from their own persepectives – what it is like to be the Mom of a child with complicated medical needs and Julie, what it was like to grow up as a frequent “guest” of our health care system.  Links to the first three posts can be find at the end of this one.  Pat

 

Julie, the water baby

Thankfully, Julie was doing well – she gained weight despite remaining a picky eater, continued seeing her specialists frequently and was growing the curliest head of blond curls. Her ever so blue eyes had a sparkle…a special sort of happiness and joyfulness was reflected from those eyes. If ones’ eyes are truly a window into your soul…Julie’s soul was special…I believe she compensated for many of her physical deficits with an inner strength, fortitude, joyful disposition and physical stamina.

Miraculously the hole in Julie’s heart closed and she made it through that questionable first six month period. It was imperative that she begin treatment for her bilateral club feet and Dr. Miller, an Orthopedist, cast her feet and legs to slowly correct the severe deformity.  It couldn’t have been comfortable to have both legs heavily wrapped in plaster casts but Julie seemed to adapt. She kicked those legs using her powerfully strong thighs and often kicked an innocent victim while changing her diaper!!

 

The upside of those casts

What those casts also provided, for Julie, were two very strong support systems for walking, so Julie took her first steps long before her twin brother. She hobbled from chair to chair and walked pushing her Fisher Price shopping cart. She saw life from another perspective. Julie gained wisdom and vision before her time – another development I look back upon now and wonder if she saw more than meets the eye…

Julie walking with the aid of her braces

Monthly we went back to her physician to have those casts removed and reset. The change in her foot deformity was a very slow and painful process. Julie screamed every time the electric saw cut off those casts. It is never easy to watch your child scream during a procedure and certainly I had to be strong for her. Inside, my heart was breaking, watching Julie suffer while correcting the first of her many birth defects left me almost breathless. At that moment all I could do was turn Julie over to her physician’s care – trusting that Julie would get better through every one of those heart-breaking appointments. Looking back, it was that trust and the letting go that eventually empowered me to continue this journey as the supportive parent that was needed.

 

What I learned from raising Julie

We did question what caused Julie’s birth defect. Was it something I did during pregnancy? Julie’s Dad and I went for genetic counseling. We were told it could have possibly been from eating raw or green potatoes during the very beginning of pregnancy or if I had been diabetic could be have been another “possible” ; there was no known cause for Sacral Agenesis. That appointment relieved the guilt I had felt and allowed me to let go of yet again something else which over which I had no control. The cause for Sacral Agenesis didn’t matter and it couldn’t change the reality of what was happening. The reality, aside from the medical interventions, was that we had a precious baby who radiated happiness and joy; a baby who could cry as loudly as her twin brother and who deepened my ability to love unconditionally.

 

Here are the links to the first three parts of the story:

Road Trip – My Life with Sacral Agenesis

The Beginning–Julie’s Mom’s Story

A Day in the Life with Sacral Agenesis

 

 

 

 

6 COMMENTS

  1. Hi Nicole,

    I apologize for the delay as I was having my surgeries and recovering. Wow! What news. I can’t imagine being a parent in this situation but can tell you what I do to find surgeons to help. I go to US News and World Reports and searches best hospitals and pick my discipline. Then I research the doctors listed. Also I ask surgeons I trust who anywhere in the country would be the best. I wish I knew pediatric surgeons but I’m dealing with finding adult surgeons who can handle me with my issues.
    Feel free to email me at hemkerjulie@gmail.com if you would like to talk more. I can try to help you research if you’d like. I seem to have a ton of practice :) All my best wishes to you. Oh I was a twin just for a little extra information and my brother has no physical issues at all.
    Best,
    Jules

  2. My 12 month old twin daughter was just diagnosed with sacral agenesis from an xray, next step is an MRI and surgery to support the spine before she turns two. I really don’t know what to expect and I want to do everything I can for her future quality of life. Any resources or links or referrals to the best spine surgeons in the country would be greatly appreciated.

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