This is part 2 of a series of posts written by Julie Hemker, a young woman born with sacral agenesis – a condition that has required more than 40 surgeries to date – and her Mom, Charlotte Schild, who, together with her husband, raised Julie to be independent, optimistic and full of love for life.  Thanks to Julie and Charlotte for sharing their story.  You can read Part 1, here.  Pat

by Charlotte Schild

Charlotte Schild circa the 70s

My daughter, Julie, was born with a birth defect called sacral agenesis or absent sacrum. In the 70’s routine ultrasounds weren’t normally preformed during pregnancy. My pregnancy was normal and although I am a fraternal twin, my OB doctor assured me I would give birth to a 7lb. baby since twins “always” skipped a generation. Au contraire!!! Julie was born first at 4lbs.10oz and her twin brother Charlie-breech- weighed 3lbs.10oz.

It wasn’t apparent to me until later that night Julie had any medical problems. I was actually concerned about Charlie and his low birth weight. Since Julie was born with bilateral club feet my husband immediately saw her legs and feet and knew something was wrong. Julie and Charlie were bundled up and brought to me to hold and as mom; the love-fest began.

My husband told me that evening that “something was physically wrong with Julie” and we would learn more the following day when Dr. Miller, orthopedic surgeon, affiliated with Children’s Hospital in Columbus, Ohio, would come to see Julie and talk to us.

Interestingly, Dr. Miller had been a childhood star playing a character in the “Our Gang-Little Rascals” series and somehow I could feel that same joyful spirit in the midst of his presenting some disheartening news to us.

Baby Julie

I will never forget that first meeting in my hospital room – he explained Julie did have a birth defect called sacral agenesis which usually included many anomalies. He suggested that we take Julie home from the hospital and within the next 8 weeks recommended diagnostic hospitalization to determine the extent of her anomalies. She needed to gain a little weight before the testing.

Julie was the first to come home from the hospital. It was time to introduce Terra (age 2 1/2) to her new sibling and explain that she also had a baby brother coming home soon!!! Charlie, unfortunately, remained in the hospital for an additional 7-10 days.

That was a difficult time going back and forth to the hospital spending time with Charlie and taking care of Julie and Terra. Thank goodness for family and their help. Charlie’s coming home finally enabled us to begin being a family.

Julie had bilateral club feet and lacked muscle development in her lower legs from the knee down. It was easy to grasp that medical problem since it was so visible…what we didn’t expect were the findings from the five day diagnostic hospitalization occurring a few weeks later.

All sorts of tests and x-rays were completed including consults with orthopedists, neurologists, cardiologists, urologists and pediatricians. We were given a written list of Julie’s anomalies including her upcoming appointments. The list was extensive. Julie lacked nerve innervation in her lower extremities, including bladder and rectum. She had a spastic/neurogenic bladder and a horseshoe kidney. Julie had a hole in her heart and we were told to watch for cardiac failure within the next 6-8 months. There was reversal of intestines-stomach on right side with mild mal-rotation of the left sided colon. Julie also had bilateral club feet. We didn’t know if Julie would ever walk. We didn’t know if Julie would even live.

Julie’s twin, Charlie

It felt like the bottom had dropped out of our lives. I remember feeling totally numb unable to comprehend what all this meant and unsure how to proceed. Certainly I was afraid of not being able to meet all these medical needs Julie had – what if she died in the 6 months – I had to do everything I could to keep her well not knowing what the future might bring. I had to do this. I also had to be the best mom I could be to Charlie and Terra.

Survival mode kicked in. Julie came home from the hospital and now our family had to mesh and somehow we had to find normal. It was recommended that we move from the county where we had resided to Franklin County where, perhaps better services might be available to Julie through the Easter Seals Agency at that time called, The Crippled Children’s Center.
Moving is never easy. Trying to move, take care of Terra who was struggling to adjust to two new siblings, feeding the twins every 2-3 hours and don’t forget the list of doctor appointments kept our household very busy. We moved and settled in and could not have done so without family and friends’ help.

Charlie was a precious little newborn. He was docile and took his bottle without a fuss. He also was such a cuddler and loved his feeding times. Julie’s GI problems probably caused the colic and difficulty she experienced at bottle time. I remember holding Julie and walking throughout the house gently patting her back trying to make it easier for her. Terra loved her naps and also loved pre-school so she fell into her routine.

Big sister, Terra

In those two months certainly so much had transpired in our family but I didn’t expect the sudden diagnosis of cancer for my father. He died within 6 weeks and I remember driving to Cleveland every weekend with my sister who also lived in Columbus while my husband took care of the children. It was such a sad and difficult time for me – letting go emotionally each week I saw my Dad and then hurrying home to nurture and provide love to my family.

It never occurred to me during that time that a funeral in Cleveland would separate me from the twins and Terra. Suddenly my husband and I had to be in Cleveland but we needed 24 hour childcare for the children. My sister-in-law was able to keep Terra for those 3 days but she also had a newborn and obviously was unable to keep Charlie and Julie. We were not able to travel with the twins and suddenly had to find someone to watch them. As supportive as friends had been they were afraid of taking care of Julie. What a responsibility to place on anyone. I hadn’t thought about it from their perspective.

At that moment I saw the reality of our life as one who was looking in from the outside. Julie could have cardiac failure at any time – we were living such a volatile life and yet for us it had become our normal. It is amazing to think back upon that time in our lives. To provide the medically safest environment for Julie and wanting to keep both Julie and Charlie together we found a respite facility for developmentally delayed children who were able to keep the twins while we attended my Dad’s funeral. Clearly that was a heart-breaking time for me – feeling so guilty leaving the twins in a “facility” that I had been unfamiliar with but knew was reputable and safe since it was highly recommended by the Crippled Children’s Center.

Ironically, we returned back home on Thanksgiving Day. Despite the difficulties and unexpected losses, I was thankful for my life – thankful to be home – thankful for my family – thankful for my health – thankful for my faith in God – and thankful for the wisdom and profound medical skills of Julie’s doctors.

Other TDWI posts on Julie’s Journey:

Part I: Road Trip (My Life with Sacral Agenesis)

15 COMMENTS

  1. Hi charlotte I would love to contact you. I have never found anyone to talk to with Sa. There was someone born after 5years of myself being born. I.was asked by my specialist to go and meet the family to give them hope. I was quite young then and that’s as far as it went. It.seems everyone with this condition lives in the USA. Look forward to hearing from you

  2. Hi, I’m a 17 year old girl who also has sacral agenesis. Reading this was so wonderfully refreshing and hopeful. The part about the possibility of never being able to walk truly struck a chord with me. For the first 4 years of my life my parents searched all over the place for doctors who could offer some insight as to the likelihood that I’d ever walk- not many had high hopes. But I managed to pull it off and i’m quite proud of the crooked “swagger” I have when I walk. Sure, my calves are disproportionately small compared to the rest of my body…but they do what they’re supposed to and that’s all that I’m concerned about.
    Thank you so much for posting this. It’s so nice to be able to relate to someone about something as obscure as sacral agenesis :)

    • Dear Nina,
      Hi! I’m Charlotte’s daughter Julie, now 37! So glad you found my Mom and me. I have a little swagger too :) If you would like to email me or my Mom privately let me know!
      Best,
      Jules

  3. i have a 14yr old daughter with sacral agenesis and it was lovely to read some elses feelings and experiences. it would be great if you could email me as im sure my daughter would love to get advice from your daughter. thanks.x

    • Hi Sharon, I have forwarded your email to the author. So glad that you and your daughter found this helpful….pat

    • I too have sacral agenesis and able to walk unaided. I am 46 now with two healthy children. Reading what your mum went through highlights how difficult it must have been for my mum as i was the middle child of 5 and i was constantly in and out of.hospital and she was a single parent with 5 children in.tow all.close in age. I find you a truly inspiring beautiful.young lady who embraces everything. I feel.the need to hide and wish i didn’t. I have not seen many people with the use of their legs. Feel free to email me at. Tracey.kids@blueyonder.co.uk

  4. What a wonderful insight on your journey Charlotte! What strength and a positive attitude you have an instilled in your family and others!

  5. Hi Charlotte and Jules,
    I love you guys and am so proud to be your friend and “sister”. You are both wonderful to share your story which undoubtedly will give strength and hope to others. Charlotte you are the most amazing mother and Julie you give happiness a whole new meaning. I will always keep you in my thoughts and prayers.

    Your Friend,
    Always Linda P.

  6. This is amazing! Thanks so much for sharing and WAY TO GO MOM! I am a twin too, the smaller one at 4 lb 13. Our mom’s doctor apparently figured out there were 2 of us 3 weeks before we were born. Just having two newborns (or one, in my limited experience) is plenty enough work without the added challenges you faced. I’m looking forward to reading more about your strong and brave family.

  7. My Mom, Charlotte, is the pillar of strength through often turbulent times. Reading her story of the beginning is chilling and to hear, still, the strength she had to go on and and on and on. She continues to be my hero and rock! Thank you Mom for always being here for me, even now, as we deal with different medical “challenges.” Mark and I couldn’t do it without you and Dad! Always know that what I remember is how much fun you made anything and everything. You are THE best Mom anyone could dream of having!
    Love,
    Jules

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