We first met with an orthopedic surgeon about 25 weeks into my pregnancy. My OB had never seen a missing fib on ultrasound and couldn’t give us any information on our unborn baby. By the time we met with the orthopedics department at Lurie Children’s Hospital, I was already pretty versed in Fibular Hemimilia (thanks to Google, blogs, and a Facebook Support Group) and had even already met two little kids that also had it. I was certain it was what our babe had, but we wanted to hear it from a medical professional.
Dr. Michelle Sagan at Lurie’s confirmed after looking at our ultrasounds that baby Born was missing her fibula, her right tibia was measuring shorter than the left, and the right foot looked different than the left. She was surprised how much we already knew and gave us comforting words that our baby would be totally okay and that she would be able to walk, run, and have a normal childhood no matter how severe the case. She told us to just enjoy the rest of our pregnancy, plan for a normal delivery and life with a newborn and come see her once baby Born arrived so we could talk more specifically to her case.
On June 27th, 2015, Maely Gold Born absolutely surprised us when she arrived on my best friend’s wedding day and was a girl! She was born via cesarean because the little stinker was fully breeched. I held and loved on my babe for about an hour before I thought to look at her foot. Matt helped me unswaddle her and showed it to me. As soon as I saw her sweet malformed foot, I knew amputation was probably going to best for her. While that may seem sad for some to read, it was really a blessing that her treatment plan was so clear to us. I heard so many stories while pregnant about amputation vs lengthenings and we just prayed that when baby arrived, we would have a clear answer instead of feeling torn between options.
We met with three orthopedic surgeons (Luries and Shriners) in Chicago after she was born and all agree that her right foot and ankle structure will not be fully-functional for her and that she will succeed greatly with an amputation of her right foot below the heal pad and replaced with a prosthetic. There is no serious demand to do the surgery at any specific time. We could wait years, even until she was old enough to make the decision for herself, but we feel very confident that it is the right choice to make for her now. Little Gold won’t be held back by FH. She should hit all the typical milestones (and is) as any other newborn would. When she begins to pull herself up and is getting ready to walk, we will have her surgery. It will only be a few weeks after surgery that she will be able to get her first prosthetic and begin to walk.
We honestly feel so at peace with our treatment plan. We haven’t fully decided on our surgeon/hospital but we have two great options and can’t go wrong with either one. We are excited for all the possibilities Maely has and know she is going to amaze everyone around her.
God is with her; she will not fail.
Megan lives in Chicago with her little family of three. She loves Jesus, interior design, anything gold, and Pinot Noir.
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