Pediatric dwarfism clinic
[Congenital diseases] Mom, why am I so short?
My daughter has hypochondroplasia. With a big and horizontally oval head, she already looked different compared to the other kids at the age of 3.
We went to a nearby pediatrics hospital first, where we were referred to the orthopedics department at S Hospital. The doctor there explained to us our daughter’s situation, comparing an x-ray of a normal child. He just told us to feed him all the necessary nutrients and that she would be shorter than other kids.
I was in such big shock after we got out of the hospital that I couldn’t just stay at home. It was hard to believe, so I went to I Hospital as well. The doctor there said that it was hard to come to a definite conclusion and that we would have to wait and see. He recommended us to go to a 3-months “growth program” that was organized by a sports medicine clinic. Back then, we weren’t in a situation where we could pay 300,000~400,000 KRN a month and travel for an hour back and forth, so we had to give up that option.
Brave and confident child
As she grew, her forehead became more protruded with no development of the ears. She was shorter than 2-year-old children, so the teachers at the kindergarten sometimes asked me if there was any problem with her. When she was doing back flips at the taekwondo lessons, her head touched the floor before her head did. Despite her condition, she was rather brave and daring, and always full of confidence.
I was just worried without too much action until people at church recommended me to go to N Hospital. There, we found out that Professor Song was a specialist in this field. So I came home and looked up online, and learned that he worked at KUMC. So we went to KUMC to get overall examinations, and were told to come back in 6 months. But I always felt like I had a big burden. When I went back to the hospital 2 weeks after the examination, the professor introduced me to a member from Little People of Korea.
I met a member of LPK there for the first time, and I was shocked totally shocked. I felt sad that Kyeong-Eun’s was going to have to survive this world that is hard even for normal people to live. I thought she was just going to be short, but they told me that she might even be unable to walk because the nerves get tangled. I couldn’t accept the things I heard, and just collapsed on the floor. I couldn’t stop crying on the subway on my way back home, just couldn’t admit to reality.
My heart sank every time she asked me “Mom, why am I so short?” When we back to the hospital after 6 month, the professor told us that she needs to be operated. But I couldn’t come to a decision easily. I didn’t let a little child get on the operation table, and was hoping there was some medication or exercise that would help her grow.
A church member who came to the hospital with me called our pastor and requested him to pray for us. She also thought that the surgery was a good idea. If I were to decide for the surgery myself, I wouldn’t have done it. Anyways, even though the decision was made, not everything was easy. The day before the surgery, I was so shocked after I listened to the complications of the surgery and signed the surgery consent form that lost my consciousness. Not only that, the surgery took forever that I couldn’t even look at my child coming out of the operation.
Kyeong-Eun had bandages wrapped around her leg. I was able to sleep only for a few hours because I was busy massaging her foot to lessen the pain and icing her forehead to decrease her temperature. Rehabilitation therapy began after 3 days. She was crying when she was on her foot, I cried too but there was I could do about it.
But the nurses there rent her game consoles and took care of her very well. Daily 1mm-lengthening left a lot of scars. She didn’t want to go outside and let people see her device on the legs. When I took our outside on a wheelchair for the first time, children passing by saw her legs and got shocked, and called her RoboCop. After that incident, she was reluctant to go out and wanted to stay home to avoid all the teasing.
So that made me take her outside on a wheelchair even more often and walk around or go window shopping. Some people felt bad for us, some asked me how I could let a little child have a surgery like this, and some said that we had too much money. Everyone said whatever their personality allowed them to say, but as a mother, every single word they said was being hurtful and would get upset after I got home.
When we got home after discharge, the rehabilitation therapies didn’t go as well as I thought. We got rehabilitation from a hospital that was 30~40 minutes away by walking. The bone had grown 10cm but, the tendon wasn’t as lengthened as the bone. It was noisy whenever Kyeong-Eun was there to be treated. I was trying to smile next to her, but I was crying inside. Because she would cry a lot louder if she knew that I was worried. Anyways, she received the surgery for the tendon as well.
Because of a long period of disinfection, the skin around it started producing pus due to alcohol allergies. The weird thing was that the area became full of pus when I used the disinfection medicine. We even got antibiotics shots around the pin insertion, but it was no use. It was way later when I found out that we should have used saline solution only. Interestingly, it was okay when used saline.
The nurses were disinfecting the sound when she was hospitalized once again. We had to tell them that she was allergic to alcohol every time they came for disinfection. We had a hard time after re-admission to the hospital because little details like these weren’t recorded in her patient’s information.
Through all kinds of agony and pain, Kyeong-Eun was able to lengthen 10cm and 8cm in the calves and thighs. Before her lower body was short with a protruded head, but now she looks like a normal person. It is just that the skin in the operated area is raised because of atopic dermatitis. They said she will have to have a knee surgery because it was not managed well right after the surgery. The raised area is itchy and esthetically unattractive.
When she went to school after the surgery, there were also kids who felt pity for her. But because she is afraid of getting hurt, she is rather very careful about getting close with them. Also, her grades dropped because of the frequent surgeries. Sometimes she gets upset because some kids make fun of her disability.
Even now, when I see short children on the street I think to myself and hope that they can receive the surgery and grow tall as well. I also want to tell the parents who are waiting for the surgery to think first about what would be most beneficial for the child. If you become too soft hearted and think that the child is too small for the surgery, you might be not thinking for your child’s future.
There are also a lot of people who help and encourage me. After my child had gone through such illness, I began to understand handicapped people and empathize with them more. I came to realize that even though they have physical disability, they are more warm-hearted than normal people.
There is something I like to tell the society. When I walk on the street, there are quite a lot of people who keep staring or look at us disapprovingly. But I want them to remember that their actions can leave big scars to others. Being handicapped just means having an uncomfortable part in the body, it doesn’t mean that they are any different than other people. Their careless words can hurt other people. I hope people can help disabled people when they request help and treat them equally as other people.
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