Thursday, October 3, 2013

Guest post: When doctors become patients

I recently gave birth to a beautiful baby girl.  My entire pregnancy was so incredible -- I loved every minute of it!  I never thought for one minute that my baby could have anything wrong with her.  But alas, she was born with a hand deformity that was not diagnosed in utero.  I cried non-stop for days.  My husband would come home from work and cry with me, hold me while I sobbed, "Why our baby?" While I know that this hand deformity will not stop her from becoming an amazing person, amazing daughter, I know she will struggle because of it.  I wish it was my hand, not hers that was deformed.  I wish I could take back whatever I did wrong during my pregnancy.  I wish so many things.

So it started, the doctor visits. Today was our first visit to the orthopedist.  He didn't have any good news for us.  He just said, "We'll have to try to give it function. When we walked out of his office, I was stunned.  "Why didn't he tell us more?  Why didn't he know what else to say? Why didn't he give us a clear answer about what the future holds?"  My husband pointed out that he probably did not know what the future held.  That he probably didn't know what else to say.  That only time would tell what the outcome would be.

I made an appointment with another orthopedist, in hopes of a better and clearer picture of what to anticipate. But I know that probably nobody will be able to ease my mind the way I'd like.

I know it could be worse.  There are children out there with cancer!  With immunodeficiencies. With cerebral palsy.  With all kinds of terrible things.  How lucky I should consider myself that my baby only has a hand deformity.  But I can't consider myself lucky. I just cry and cry, and ask myself, "Why my baby?"

11 comments:

  1. You don't say how recently you gave birth, but here's my parallel story:
    When my own daughter was born, 6 months ago, she was diagnosed with hip dysplasia at around 12 hours of life. At our first ortho appointment, she was put in a pavlik harness and we were told it would be at least three months until she came out and I started bawling.
    For background, I'm a pediatric geneticist. I specialize in inborn errors of metabolism and to be honest, close to 25% of my patients die in infancy or are permanently neurologically devastated. So I was super self-critical that I was so upset about her hip dysplasia.
    But I got used to it - I got used to the fact that I don't use the doctor part of my brain when it comes to my daughter, and instead I use a part of my brain that worries about stuff that is objectively trivial. I got used to the fact that I don't have a perfect daughter, but that she is pretty awesome and her hips do not make the baby.
    But most importantly, I got used to having a baby of my own. The first part of having a newborn is already SO overwhelming, that to have a newborn with a health problem, even a super trivial one, at least for me was on the verge of unbearable. And then, one day, somewhere between 2 and 4 weeks after she was born, everything seemed normal again, and I felt totally calm, like a light switch. So hang in there, it gets better and congratulations on your baby!

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  2. We have a family friend whose child was born with a hand/forearm defect as well, and they were really devastated. This baby is now 15 months and really active and adorable. Your heart aches for your child, and there's endless guilt, but hang in there!!

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  3. I had almost the exact same experience as the Larval Doctor. It is normal to grieve at the loss of the picture of the perfect and healthy child. I'm sure your daughter will delight you in so many other ways, so that eventually her hand just becomes part of her, something she just deals with on an everyday basis like the rest of life and you will find yourself dealing with it and all it entails as part of your everyday routine, without even thinking about it.
    The jealousy towards babies with no affliction to deal with will be there, and that is normal, too.
    Your child is lucky to have parents who clearly love her so much, and this will matter so much more in the long-run than having an unusual hand.
    Congratulations on your beautiful baby girl.

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  4. I delivered just such a baby and he is starting kindergarten this year - completely unstoppable despite having only a pinky and thumb on his left hand (amniotic band, we think).

    My daughter (5 mo) was hospitalized twice shortly after birth for severe jaundice. Subsequently she has been a poor weight gainer and we are now visiting a specialty feeding clinic. I feel so stuck not knowing whether she's a "healthy baby" or a "sick baby." Like you, I know oh-so-well how much worse it COULD be but that doesn't stop me from being her mom and having all those mom feelings.

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  5. I agree with others, thinking through your mommy-brain is soo different than using your mommy-brain. Our son was born with a facial capillary malformation, due to its location the doctors didn't know if it would spread and be disfiguring or if it would recede so they told me "we don't know, let's watch it until he's 4". I was devastated. He is a happy, healthy 2 year old and I've learned to deal with it.

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  6. I had a med school classmate and an intern that did not have the use of one of their hands. Both succeeded quite well and are beautiful people. One is saving the world with the CDC in Africa! My intern needed an assist (just someone to help hand her stuff) with the central lines, but that was about it!

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  7. A woman I went to college with was missing one of her hands and was also on the varsity basketball team. I thought she was a pretty amazing person.

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  8. You didn't do anything wrong. I hope you can know and believe that. Also I hope your daughter's primary care pediatrician (and your own OB) can help you know that too. I'm sorry that things feel so difficult now, but there are so many ways this will get better... the coping, the functionality, and also, this will be her own beautiful self-concept and it will be okay. Thanks for sharing your story.

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  9. I agree with T 100%. Please know this is not your fault!!!! Thank you for sharing your story. Please know our thoughts and prayers are with you!

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