A Note to New Parents of A Born Just Right Baby
If you had to choose to give birth to child with a limb difference would you?
Probably not.
But every challenge our kids face are just that, a challenge. And even though I wouldn’t have asked for Jordan to have one hand and one elbow, I’m so happy to be Jordan’s mom and have her in my life. Jordan wouldn’t be Jordan any other way. As I’ve told her, she was born exactly the way I wanted: Healthy. The number of hands and feet that come with a child really doesn’t matter in the end.
Recently, friends of ours brought a darling little baby into the world. They didn’t know he was born just right until his mom noticed his shorter left arm right after his birth. They almost immediately reached out to me. And I’ll be honest. I’m SO HAPPY for them. When I told Jordan, her reaction was, “I like more people being born just right!”
This is the first time when I have known parents personally *before* they brought a born just right baby into this world. They didn’t know about his limb difference until he arrived. (Just like our experience with Jordan’s birth.) No one noticed the baby’s limb difference until his Mom noticed. (That’s what happened to me!) But the big differences is when the doctor robotically declared the baby’s limb difference as Amniotic Band Syndrome (which is when stringy pieces of the amniotic sac break apart and wrap around limbs) and I was able to offer an alternate diagnosis of symbrachydactyly. It’s all kinds of new information that can leave your head spinning a bit at first.
So I just want to offer them a few pieces of advice as they join the limb difference world.
Friends,
Congrats on your sweet new arrival. It’s okay to be sad. We all have this vision that the “perfect” baby must have ten fingers and ten toes. I have wonderful news. Ten fingers aren’t that big of a deal. Yes, you’ll probably stare at babies with two hands for a while. I know I did. But please, know that you are not alone. I am so proud to be a resource for you.
It’s okay to ask a TON of questions. When Jordan was born, I had a small group of parents I found who were incredible listeners. (It’s an online group called Sammy’s Friends.) Please feel free to ask me all kinds of questions. Feel free to ask questions to other parents as well. I know a whole bunch.
It’s totally worth reaching out and finding occupational and physical therapists now. It is never too early to find resources who can help make sure your little guy is strong and able to remain strong and healthy throughout his whole life.
It’s really important to take time and just absorb and enjoy this tiny baby zone. It’s precious. It’s quick. It’s exhausting. No matter how many exercises or appointments or whatever falls into your lap from doctors and therapists, sometimes taking a nap is more important. Actually, always try to take a nap. Seriously. I still feel like I’m catching up on sleep with an 8 and 11-year-old.
A while back I wrote the five things I wish someone had told me when Jordan was born. I still stick by those. Also, I’m so glad I can be a resource for you. Your sweet baby is going to grow to be awesome and I can’t wait to get to know him.
Love,
Jen (along with Jordan, Cam and Randy)
Welcome to the world, beautiful boy! You are lucky enough to be born into a changing society, where limb difference is no longer a big deal. People are actually starting to recognize that a person is a person, no matter his daily challenges. I’m also a ‘less than four’, with a missing left foot. But I have a great life, just like you will.
You were also lucky enough to be born to parents who love you unconditionally and will encourage you to be yourself- a strong capable, interesting boy, who is not defined my his lack of a limb. The world is your oyster, my little man. You’ll go as far as you want to go.
Here’s a long distance kiss for those sweet baby cheeks. And a hug for your parents, who were lucky themselves, because they were blessed with you.
Love,
Judy (mom to four wonderful kids myself)
Oh, Judy. You just made me cry. You rock.
Congratulations! He is beautiful! Enjoy those little squishy cheeks.
Hello, and Congratulations on the birth of your little guy! Back in 1985, I also had a son born with a limb difference – no left forearm or hand. We felt shocked at first, that is very true. But our son has grown into a confident, independent and talented young man. With encouragement and love our kids can live fabulous lives – accomplishing whatever they desire and work hard for. In fact, our son taught himself to play the guitar. You might enjoy this music video – he (Tony Memmel) wrote the song, and his wife, Lesleigh, filmed it: http://www.youtube.com/watch?v=-3Q8pRO_4MI
Also, I wrote a book about my personal experiences raising a child born with a limb difference. If you’re interested, it’s available thru Amazon. (“Five Fingers, Ten Toes…”)
If you ever need to talk or question me about anything – feel free to message me. But mostly, enjoy life with your new sweet child!
Katie M
I second everything you’ve said here. Like you say, I can’t say i’d CHOOSE to have a baby with a limb difference, but it is an incredibly powerful (interestin, challenging, and often fun!) experience.
Someone I know recently posted online that she’d had her 20 week ultrasound and was relieved to see that her baby had all it’s limbs. And while I totally understand this, I also thought “well gosh, missing part of a limb is one of the least awful things that can go wrong with your baby!”. And it’s true.
I also second Judy’s thoughts – my son was born missing his right hand and it’s very surprising to me how infrequently it is an issue with others at all. We deal with strangers’ reactions much less often than I expected. So enjoy your little one – you’re in for an adventure!
Our experience is going to be a bit different than others here because our child is adopted so in some ways we did choose to have a child with a limb difference. (We didn’t choose him because of his limb difference; we chose him because he needed a family and we wanted a child.) Zeke was born with a thumb and half a pointer finger and no fingers at all on the other side. He is amazingly creative. At 3, he dresses himself (all articles of clothing), can draw and is starting to do more than scribbling (can make jellyfish because he loves ocean things and recently actually drew the letter “E”), feeds himself, drinks from a cup with no lid, throws a ball, rides his trike, and swings on a swing (and pumps) all by himself. It’s most certainly okay to feel sad for the way you thought things would be but also know that you now have a chance to do something new and different that will bring its own unique set of joys and challenges.
Unlike most, we CHOSE our son with a limb difference & would again in a heartbeat! Our son was born in China & he’s ours because he was born missing his right forearm & hand.
In the beginning, we wondered & worried how he would do things & if he’d reach milestones & be a regular ‘track mud through the house” kind of kid. And, he’s doing beyond fine. : ) He is doing well in school, he learned to crawl, he plays soccer, he has tons of friends, he does chores & he tracks mud through the house.
One thing my 9 yr old said the other day was, “Mom, how come you never tell me to wash my hands?” WHAT??? I do! “No,” he said. “You tell me to wash my fingers.” I thought for a minute & realized he was right. After chatting for a bit, I discovered it doesn’t bother him; he just couldn’t figure out why I would use ‘fingers’ & not ‘hands.’ I told him to look at the end of his arms. He did & then just grinned at me.
Your precious new son CAN do all those things, too.
To the parents: Congratulations on your new baby!
To the baby: Welcome to our world! We love you already.
Babies are all different – people are all different – sometimes the difference is obvious, sometimes it’s not.
Rosie was still an infant, crying All. The. Time. If she wasn’t sleeping or eating, she was fussing, screaming, crying… and people would see her (more specifically, they’d see she’s missing half an arm and all of a leg) and say to us, “Oh, it must be so hard for you.” Every time, without fail, my husband or I would say, “Oh, it is…. because she cries!” She was a baby, just like any other baby. Her limbs made no difference – the hard part was just having a crying infant!
Rosie is not yet 4 years old now, and she can dress herself entirely, including her “helper arm,” “helper leg,” and doing a jacket zipper. She loves to play outside, loves Duplos, Winter the Dolphin, and helping me cook. Yes, we have some challenges we’d not have if Rosie had both hands, like that she doesn’t like it when kids ask her questions about her limbs. But if she had all 4 limbs, we’d just have different challenges. It’s not like kids w/ 4 limbs are without hard times.
So, enjoy your new baby. I wish you peaceful rest, happy family times, and many adventures together.
Thank you for writing this beautiful piece about my new nephew. My brother and sister-in-law are so fortunate to have you as a resource. They are going to be fantastic parents, and we are all so thrilled to have this wonderful new addition in our family!
Hooray! Congrats, Sarah. He’s so stinking adorable!
Congratulations on the birth of your new little one! I also didn’t find out about my daughter’s limb differences, until after she was born. In fact, I think her pediatrician whispered something along the lines of “She’s missing a few fingers and toes.” just before they knocked me back out to finish my c-section. During the time I was in recovery, my husband and my mom were told about Caitlin’s differences. My husband was asked if they still wanted our daughter to be viewed through the glass, and then he was encouraged to explain to all of the children in the family that had gathered at the hospital, so they wouldn’t be shocked at first seeing Caitlin. It was a good 4 hours later before I was given any more specific information. During this time, I felt stared at, I felt guilty, I even started to feel like people were showing up “just to look” (gawk) at our new baby girl. Took me awhile to realize they were coming to show us they loved this little girl we had just brought into the world, ten fingers and toes, or not.
Fast forward 7 years. Our daughter, is exactly like every other child her age, AND she’s different. We wouldn’t have it any other way. Through all of the questions, all of the glances, the nights I silently cried myself to sleep wondering about her future, how other kids would respond, I’ve learned one thing, as a mom, we ALL have these worries, different or not. I questioned whether I would have wanted to know before Caitlin was born, about her limb differences, then I realized it wouldn’t have made much difference. This realization, comes every time she accomplishes something someone thought she’d never do. Your son will amaze you, he will inspire you, and because of him, you will meet countless families your family may never have had the opportunity to know. He, along with the friends he’ll make along the way, will show you that it’s OK to be born different and still be JUST RIGHT.
Thanks for sharing your wonderful experience, Patty. I totally agree!!
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Hi, I’m 31 weeks pregnant and have learned that our son will have a limb deficiency. I must admit that I have really struggled with this and still trying to process how it will all work out. We are a military family who has recently moved to a whole new city and still have to work out medical logistics. I have not really reached out to other families yet but know that I need to. We have a 7 and a 3 year old daughters who are perfect and fantastic. Heck rarely get sick. We have not told our oldest yet. Still trying to figure out the perfect way…your stories have been encouraging. Anything you feel that I should know immediately would be greatly appreciated. Thanks for listening
Hi Kim,
I’m so glad you reached out to me. After being Jordan’s mom for eight and a half years, I’ll tell you that I know you will find your son will be just as perfect and fantastic as your daughters. If you can, identify pediatric occupational and physical therapists who can work with you and your son to make sure he is as strong as possible. A limb difference means the body will function differently, but when we focus on core strength, our kids figure SO MANY THINGS out on their own. You will be amazed. I have made a point of stepping back and letting Jordan figure things out. She does it all… except monkey bars. There were so many activities I worried she couldn’t do. But I was wrong. She figures it all out. It’s awesome. Congrats on your new baby. Please consider me a resource and feel free to email me: jen [at] bornjustright.org
Thank you and I will.
I just want to say thank you! Reading and hearing about Jordans experience has helped my husband and I so much!
Our youngest daughter Madeline was born in October. She has a shortened right arm (just above the elbow) and a shortened left leg (femur is extremely short). Although they said all of her limbs were short before birth, the left arm and right left look “normal”. We are still new to the limb different world but learn/see/hear new stuff all the time! Reading about Jordan’s experience helped ease my wor
I’m so very glad!!! Congrats on your little one.