Limb defects

I'm 32 weeks pregnant with my first child and halfway through my pregnancy I found out my baby will be born with a birth defect - he is missing one of the major bones in his lower right leg. The doctors have not told me whether it's his tibia or fibula, but it's one of them. His right foot bones have been affected as well because of the missing bone.... can anyone here relate to this? I am lost, as I was told this is a very rare condition and I would love to talk to someone about it who can relate. Currently seeking a pediatric orthopedic.

3 Replies

  • Hi and thank you for sharing your story. I'm sorry for what you and your baby are going through. It must be an emotional, overwhelming time. I don't have experience with birth defects, but my daughter was born at 25 weeks, suffered a severe brain hemorrhage and many other complications, and for a long time we didn't know if she would ever walk or talk or sing until she did. She is now 5 and thriving beautifully, with the help of wonderful doctors, nurses, and Early Intervention therapists along the way. I hope you find the resources that are right for you. Please know that, as rare as your baby's condition might be, others have been through similar journeys and are ready to support you through yours. Sending hugs and best wishes!
  • Hello and Welcome to Share- I am sorry you find yourself facing something like this in a time that should be joyful. My daughter was born with Trisomy 18, which is a fatal birth defect. During her short life I found myself visiting a pediatric cardiovascular specialist for some of her care. You're in the right direction looking for a pediatric ortho specialist and as Karrri suggested, early intervention programs would likely benefit your son. You might want to look into a maternal fetal medicine center, if there is one near you, for a consultation if you haven't already. Please know you're not in this alone and we are here for you with support as you navigate this aspect of parenting.
    Love and Hugs
  • Hi and welcome to Share. I'm sorry you and your son are facing such a scary time. My child wasn't born with a birth defect so I don't have experience with this specific diagnosis. I am raising two daughters who have special needs (as a result of their premature birth). It's not the path I envisioned when I dreamt of becoming a parent and it has it's challenges. But my girls give me so much inspiration every day. I encourage you to continue to reach out, locally to find the support that both you and your son will need moving forward. A pediatric orthopedic is a great start. I would also connect with your local Early Intervention program in your county. My girls received therapies in our home, provided by our county. It was a godsend for their development. Your physician and/or pediatrician should have this information for you. If they don't contact your local Neonatal Intensive Care Unit. They will have it.
    I'm grateful that you've reached out to us here at Share. While our journey's may not be exactly the same we are all on the same path of experiencing a different route in pregnancy and parenting. We are here for you as you move forward. Please update us on how things are going for you and your little guy. We are here for you.

    Take care,