Thank you, Amanda, for sharing your story. I am so in awe of all moms, but especially those like you who take a challenging situation and turn it into a learning experience, and focus on the brighter parts of your world. Your baby girl is lucky to call you mom. I do agree with you, you were given this little one because you were ready to take on the challenge. :)
All photos from Amanda Smith
1. How was your pregnancy?
My first pregnancy was brutal and exciting all rolled into one. I was very sick my entire pregnancy. I got the flu badly and from then on it was downhill. I lost 35 pounds, couldn't keep any food down and had minor pelvic pain for most of my pregnancy. To top that, she was breach so I had to have a cesarean.
2. Can you describe what it was like finding out your child had a limb defect? When did you find out- pregnancy, after she was born, etc.? What was that experience like, how did you feel at first?
It was absolutely gut wrenching finding out about the defect.
I found out when I was pregnant very early on before the sex was determined. It happened to be the one appointment I went to alone and had an ob appt right after.
Distraught doesn't even come close to describing my original feelings, then guilt, anger, and just sadness. You are anxious enough while you are pregnant, times that by like 50 and that's what every appointment felt like.
After all of those initial feelings came acceptance. I am glad I had time to come to terms with it before she was born otherwise I would have been a basket case. I was frustrated above all else because I was then considered high risk and had ultrasounds every 2 weeks and each of those was like 3 hours. It became daunting as they made us see everyone there and multiple docs every time. We had to see a geneticist and specialists in Boston.
The one positive was that we have tons of ultrasound photos and we found out that baby birth weight is directly connected with what mommys birth weight was. I wasn't gaining weight so naturally docs were worried. As it was I was born at 5 pounds 13 ounces and my daughter was born 6 pounds 3 ounces. I was already predisposed to having a smaller baby.
3. What advice do you have for moms who find out something is "wrong" medically with their child?
Don't freak out. Take a breath. Listen to everything the doctors have to say even though it is difficult. Do your research and ask questions. Reach out to support groups
4. What helped you through that challenge, was it even a challenging time or did you just take it in stride?
It was challenging before acceptance and understanding.
I blamed myself for this happening and didn't know if I could be the best parent possible to a child with a limb defect.
Then the doctor told me that no one could have predicted it as most likely her hand got caught in the amniotic bands during development and we were lucky she didn't get the heart problems that normally accompany this deficiency.
Funny enough 2 things also happened to me. I had already met someone before with the same defect through my job. He was amazing and motivating and speaks nationally for a living. Secondly the dr told me you don't normally see the amniotic bands and during my 2nd pregnancy we saw them on an early ultrasound, what are the odds?!
5. What is your life like now, almost two years later, with this diagnosis? What sorts of things are different for your child that other kids don't have to worry about?
My life is chaotic at best! We are approaching 2!
She copes amazingly and does things I've never even imagined. She is also the spunkiest, intelligent, full of personality toddler I've ever met!
Around 8 months until 12 months we had to do occupational therapy to help her learn how to crawl and use that arm as well. We also went to the Shriners hospital in Springfield and got several prosthetics that she no longer wants to use which is great because we always wanted her to make that choice on her own.
She will have to go again but we are waiting until she's 3ish or more vocal (not that she doesn't talk or sing enough already!) to see if she wants another one. She'll have to go to OT again as well to help with things like cutting with a knife and tying shoes. we always have to roll up a sleeve on long sleeves and she can only grab things with one hand, but she uses the other to balance things on it.
6. Is there a medical explanation for this situation?
It is just an anomaly that is more common than people think. We are beyond lucky. As I mentioned we went to the Shriners and like I said some things have happened like meeting someone just like my daughter. Her godmother happens to be engaged to an orthopedic surgeon who knows an experienced doc at the hospital that we got to meet with. Things do happen for a reason.
7. Is there anything about this situation that has made you think positively or seen that things happen for a reason, or that you are grateful to have learned through the experience?
A bit preemptive on my things happen for a reason!
I think this happened to is because we could handle it. She was also given a great personality, red hair, and a gift for music both singing and playing!
8. What is your daughter's name and what 5 words would you use to describe her?
Sophia Renee. Happy, loving, surprising, goofy, clever.
9. What is a funny story about your daughter you would like to share?
Hard to answer this as everything she does is pretty goofy! One time she was in her jumper and bounced really hard for like 20 minutes then next thing I know she's hunched over passed out snoring in it.
After I had my 2nd daughter this past fall we went apple picking with friends and family. We had her in the stroller. I will start with she had always loved apples. So we were picking apples and had the bags on the ground. We handed her an apple to hold not thinking she would do anything. Next thing we see she puts it in the bag. Little did we know she had taken a bite. We hand her another one and then she takes a huge bite of it! We then noticed what she had done with the last apple and 5 others she got ahold of! She continued to eat the entire apple. She was 13 months old. To this day still loves apples and can eat a whole one entirely!
I hope she has a bright future, one with people who are more understanding and nice rather than mean.
I know people will look at her differently but I hope they get to know her as I know she has a lot to offer. She's loving to the point we call her motherly. I hope in her generation they have evolved more than to just jump to judgments.
11. Anything else you would like to add?
I wouldn't change a thing. I know she will have it tougher than most but I know we can give her the life she needs to succeed.
Every day no matter how rough she always smiles and makes me smile. She is a breath of fresh air and I can't wait to see what else she can do.