“We saw her hand and foot were different before they took her away.’: Mom to daughter with congenital limb difference vows ‘I wouldn’t have her any other way’

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“My history before getting settled down with a family is quite long. I’m a 26 year old Norwegian woman from Hordaland, West Norway. I’m together with my best friend, a lovely man from Dublin, Ireland who is 32 years old. We meet when we where living in Fuengirola in Spain.

I always wanted kids so when I met my partner, I was ready to settle down and live the quiet family life instead of traveling around all the time. I had done everything I wanted to do before coming responsible for somebody else.

After a while together in Spain, we found out we were expecting a little daughter together. With him being from Ireland and me from Norway, we needed to decide where we would raise her. We ended up choosing Norway for a start. And since Mia came a little different than expected, we are so happy we ended up choosing Norway, which has an amazing health care system. Where we end up later we will see, little Mia is an Irish and Norwegian citizen, so we have the option to live in her father’s country.

My pregnancy with Mia was amazing; I didn’t have any issues or pregnancy symptoms other than 20 kilos extra, a big belly, and some lovely kicks that I just grateful to feel every day. I will call it a dream pregnancy for sure. The birth was coming suddenly and as a shock since I literally was in labor without knowing it. I was just having some back pain the day it started. I woke up feeling some back pain, nothing more than when you have been to the gym the day before and wake up sore. But I was going to the hospital to have a check-up. I was not really feeling up to that because I been there a couple of days before and everything was going well, and I still believed that was the case. When I got the hospital, they quickly could tell my labor had started. So, we were sent to a hospital in Norway that could receive premature babies and had an intensive unit for babies.

Since this was two months before the due date, they tried to stop the labor, but after some hours they found out they needed to let the labor happen since her heartbeat was slowing down a little. The doctor then told us we would have our daughter really soon. I didn’t believe him because I still didn’t believe I was in labor, even when he asked me to start pushing, since I was in no pain whatsoever. After giving birth I have a saying that, for me, giving birth is less painful than stepping on a lego.

They put Mia on my stomach for a little while, and we saw her hand and her foot were different straight away. But then they took her away to check her since she came too early. She also needed some extra care because of her hand and foot, so she was sent to the newborn intensive. I needed to lay in the delivering room for a little while to make sure I was all right after giving birth, something I couldn’t understand since I was able walk the second after she was out. The only thing I wanted was to go over to the newborn intensive where she was sent to. I had to lay there for an hour alone not knowing how our daughter was, it was the longest hour in my life for sure.

baby with arm in a cast
Courtesy of Charlene Storhaug

Mia was born with congenital limb difference. We had now idea before she was arriving, and it really didn’t matter either. She is our daughter, and she is born perfectly the way she was supposed to come as we like to say. We got a daughter, and that is the most amazing thing you could experience no matter what. I wouldn’t have her any other way; she is who she is because of it, and that’s the little girl we love every day.

We needed to stay in hospital for a couple of weeks since she was premature, and in Norway they don’t send home babies that are less than 35 weeks old. But other than missing two bones in her body she was completely healthy, and had no syndrome that is often seen when they have continental limb difference.

We were changing hospitals, meeting specialists, and getting all the information about our daughter’s condition and what the future would look like having a daughter with Congenital limb difference. The first days after little Mia’s birth we knew all about her condition and what our future included. Congenital limb difference is a condition where the babies don’t form legs or arms in the uterus, that means they are missing some parts or that they have some extra parts. The condition can come about for many different reasons such as various syndromes or by itself. In our situation, it just came by coincidence and without a syndrome or other health issues.

In Mia’s case, that means she is completely healthy except for missing two bones that didn’t completely form when she was in the belly. She is missing the radius bone in her right arm. To explain it simply, you have two bones in your arm. One that’s on your little finger side, and one that’s on your thumb side. Mia is missing the one that is on the thumb side – that’s why she is missing a thumb and her hand is staying in 90 degrees instead of straight.

mom holding her baby standing next to her husband
Courtesy of Charlene Storhaug

Now she is using a cast while she sleeps to help stretch her hand to stay in a straighter position, then later she will have the operation to get the hand to stay in that position. She will also have an operation to give her a thumb. They will use one of her other fingers to put where the thumb is supposed to be. Then, she will have normal function in her hand, even if she is missing a bone in her arm. She won’t need that operation quite yet since she can use her hand with no problem. She doesn’t know anything else, so how she is using that hand today is normal for her.

She also missing one bone in her leg. The leg has two bones that connect the foot to the knee: One skinny bone (Fibula) and one thick bone (Tibia). Mia is missing the Tibia bone, so her foot is not completely connected to the knee, and is making her foot stay in a different position than it is normally in. She will never be able to walk on that foot, so we are going to amputate her foot from the knee. Then, she will be able to walk with a prosthetic.

We are looking forward to amputating her leg because she will no longer have her dead weight leg, and will be able to walk. She is learning how to walk with a prosthetic from the start so it will be completely normal for her from day one.

baby with congenital limb difference
Courtesy of Charlene Storhaug

When we got the message about her condition quickly after she was born, we didn’t take it hard at all. The only thing we were saying to each other was that she is born the way she was supposed to. Why she was born with a couple less bones in her body is something we don’t get an answer on, and that is something we don’t need either. She is who she is, we wouldn’t change anything about her. We don’t go around asking why it happened to her, she came the way she is meant to be and that’s it.

The medicine today is so modern that she will barely notice that she is built a little different. She will be capable of doing everything she puts her mind to, and that’s the only thing that matters. Literally the only thing I was worried about before we got all the information about her condition was if she was having any pain because of her hand and her foot staying in that position. When we were told that she wasn’t, everything was good news.

When Mia was born, we got a question about how it was to get a sick daughter. That question made me angry.  She is not sick, she is a healthy little girl that has a condition where she misses bones. She can live a good life without them and it doesn’t make her sick, it’s just making her unique. Unique is what every little baby coming to this world is.

happy baby crawling with a pacifier
Courtesy of Charlene Storhaug

Another saying I’m not so happy hearing all the time is that we are so strong parents because we got a daughter with a little other need than normally. Aside from needing operations and a prosthetic to walk she doesn’t need anything other than support, comfort and love, just like every little one. I will rather say that every parent is strong, because being a parent can be hard in so many different ways.

We may go to more hospital appointments these days, but we got a daughter that has been a dream baby since birth, sleeping through nights since she was new-born, and we are having a happy little soul every day. So, for us, I need to say being parents is easy and no hard work at all.

She is evolving just as others little girls does at her age, she learned all the skills that are expected for her age, even if she just has one leg to work with. And to people asking how we are training her to do all that, the answer is that we not training her, we just let her be a baby. It comes naturally. She is born with one functional foot, and a hand that’s staying in a little different position, but for her it’s normal so she finds her own way to work with that.”
This story was submitted to Love What Matters by Charlene Storhaug from Hordaland, Norway. You can follow their journey on Instagram

baby on the floor
Courtesy of Charlene Storhaug
Courtesy of Charlene Storhaug

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