[Congenital diseases] Mothers, be strong!
My second daughter was born when my first child was in middle school. There was a 15 year age gap, I can’t even describe how happy we were after her birth, and our family was full with laughter every day.
Because I was working when my first child was born, he was raised by my mother. But after I gave birth to the second child, I quit my job and became a housewife. It was tiring being busy with a child all the time, but it was fun at the same time. One day when I was massaging her legs, I felt that her legs felt softer unlike my first child. So I asked a doctor about her foot angle when we were at a pediatric hospital for her vaccination shots. He said that it was hard to tell because she was still too young. He told us to come back for an examination after her 1st birthday.
Finally her 1st birthday came, and we went to the hospital for her vaccinations again. He reluctantly told us that her diagnosis was “Achondroplasia.” What in the world is “Achondroplasia”? I was already out of my mind when we heard the exact diagnosis. I could not believe it! How could this happen when both my husband and I are normal? I had heard that mutations did occur a lot maybe because of the environment, but I didn’t know what to do.
Starting from a university hospital near our house, I visited several big hospitals, but the diagnoses were all the same. Her symptoms were like this. All the bone segments in the arms, legs, and fingers were very short and fat. Also the skin around the joints was rubbing against each side causing inflammation. I also noticed that her legs were bowing as she grew. We went to spirit therapy and received hormone therapy injections, but I heard hormone therapy was quite ineffective to people with achondroplasia.
At that time, I got to watch a show called “4 Little Giant Brothers” on TV, and went to meet Professor Song at Gyeong Sang University Hospital with my husband. The consensus was that she should receive the surgery when she was 7~8 years old, because she was too young then. We came back to Seoul after hearing that not so satisfying but rather relieving answer.
When I was raising Hye-In, I took her to everywhere I went. She didn’t care much about people starting at her, perhaps because she was still too young, and people didn’t care much about her height since she was little. But I couldn’t do anything about the reaction people showed after they heard her age. Furthermore, the bowing of her legs was becoming more noticeable, and didn’t want to walk too much because of too much pain.
Hye-In entered elementary school when she was 7. I became one of the members in the “board of parents” and did a lot of activities with other mothers and children. Although it was tiring, it felt rewarding to see Hye-In get close and blend with her friends naturally.
Now it was time for decision. Because she couldn’t take hot weather too well, my husband and I decided to have the surgery in the winter. Luckily, Professor had moved from Gyeong Sang University Hospital to Korea University Hospital, so she was able to have the surgery in Seoul.
The first thing that needed to be done was the Ilizarov surgery, which corrects the bowing of the legs and lengthens the leg at the same time. It was done by cutting the calf bone in the middle and correcting the bowing. How interesting is that new bone can form in between the gap!
She was hospitalized two days prior to the surgery and on the day of surgery, our family gathered together with praying heart. We were relieved to hear that the surgery had gone well, and were anxiously waiting for her to come out of the recovery room. We finally saw her coming out of the recovery room. But we were totally shocked.
Her legs looked really fat with the bandages wrapped around her legs. It was later when we found out that patients come out of the surgery with the Ilizarov device put on their legs. Because we had no idea about it, I was just completely shocked to see such image. Her legs were as big as her body.
When we went up to the ward, everyone was anxiously talking to her, so that she didn’t fall asleep. She couldn’t eat anything until let out gas. So it was painful seeing her not being able to eat when she was starving. So everyone started clapping when she finally let out gas. But she said she had no appetite and didn’t eat a lot, perhaps because of too much pain. 3~4 days later, they took off the bandages, and along started disinfection and lengthening.
We were supposed to lengthen 1mm a day, and it was going to take exactly 100 days for 10cm of lengthening in total. But it was going to be 100 days without any problems. Forgetting to lengthen or bone union during the process was going to prolong the duration. If I took all these details and problems into consideration, it was going to take about 3 months until lengthening was finished.
They told me to lengthen the device after teaching me how to do it the first time. There were so many places I had to lengthen that I often got confused whenever people talked to me or I got a phone call and couldn’t remember how much and which place I had to lengthen next. 5 days after the surgery, other than taking antibiotics and painkillers at the hospital, it was all mothers’ responsibility to lengthen and disinfect. So we talked about hospital discharge and came home after a week.
Oh! Another thing that I noticed the patients need before the surgery was their underwear. It is because they can’t put on their underwear after the surgery because of the Ilizarov device. I had a hard time making adjustable panties during hospitalization.
Mothers, be strong!
It was good to be back home, but taking care of a patient on top of all the housework I had to do was a mental and physical battle. When she needed to use the bathroom, I put her on a children’s potty and put her back to bed when she was done. It would have been tougher if she was bigger or I was weaker. I really think us mothers need to work out as well.
Hye-In also felt that diligent exercise was necessary for good bone growth. She had always been an active kid even at home, so we didn’t have much problem with bone growth. But because there was limit to how much structures around the bone could lengthen, she developed equinus deformity, which had to be corrected with a surgery.
When she got out of the surgery, I was once again shocked by the image – she had several pins coming out of her feet. We couldn’t make it too obvious to Hye-In but we were all saddened that she had to go through so much pain. She had to wear correction shoes during the lengthening process but often complained that they hurt. No I regret that I wasn’t stronger and pushed her more.
Mothers! Be strong! After the winter vacation, she started using crutches at school. So many of her friends were willing to help her, which made them naturally get close to each other. I could feel that her confidence level was going up. Days passed by with daily lengthening and disinfection and regular outpatient visits. Now we were done with lengthening, and just had to wait for bone to solidify.
Hye-In got really scared on the day we were scheduled to have the Ilizarov device removed. She screamed and cried out so loud after she went into a room for removal, and I was outside waiting anxiously. When she came out, she was drenched in sweat. She said it wasn’t as painful as she thought, but didn’t like the feeling when the device was touching the bone.
She put on a cast for about a month after that. Her leg was itchy so she asked me for some disposable chopsticks then scratched the itchy areas. She drew some pictures and wrote things on the cast and spent her ink cast days rather pleasantly. But once again, she got scared and started screaming before she even went into the room for cast removal. I was embarrassed and felt sorry for the people around us. She said she was just afraid of the machine sound.
We were done with everything, and her once bowed legs looked straight and long. She used to look chubby before the surgery but now she looked better, thanks to her loss of appetite after the first surgery. Not only Hye-In, but everyone around were happy for her.
This is how the 6-month long primary surgery ended. More than anything, I was satisfied with the fact that she had gained her self-confidence and became closer with her friends.
The 2nd surgery for femoral lengthening was done 1 year and 6 months after the first surgery. The surgery started at 9 AM and ended at 11 AM, which means the surgery was successfully done in 2 hours. She didn’t want IV painkiller so she just had painkiller shots from time to time. Two days after the surgery, she was screaming once again when she was getting the bandages removed. “What an exaggerator!” I thought, even though I could feel her pain.
Rehabilitation started right after, of course, along with screaming and shouting.
She must have been really tired from rehabilitation; she would just fall asleep right after she came upstairs. We started lengthening after a week. This time, I had to lengthen only once place, which was much easier than the previous surgery. The exercise was done with walkers first, then with crutches. We were able to go home after 2 weeks.
About 2 months later, she had problem straightening her back as a side effect, so she received another surgery for disconnecting the muscle above the calf. But she was having pain on her right calf. When I told the professor about the pain, he said the tendon could have been damaged during the surgery. He told us not to worry as it would heal as time passes by. It took a while, but her leg came to normal.
One good thing is that she didn’t have as many side effects as the other patients who had surgeries around the same time. I thought follow-up could have been not good enough due to a large number of operated patients.
She started going to school about 2 months after the surgery. She used a wheelchair at school just be cautious, and left the wheelchair at school when I picked her from the school. All her kind friends wanted to help her with pushing the wheelchair. She was also talented in origami and drawing pictures. According to her, she was popular in arts and craft class, and was surrounded by children during those hours. I was happy that she seemed to have a good time at school.
Just like in the 1st surgery, we had a total lengthening of 10cm after daily 1mm lengthening. The same procedure of lengthening – bone solidification – device removal – putting on cast was repeated just like after the 1st surgery. She was once again afraid of taking out the device, but she had a smile on her face when she was coming out of the room.
The “femur” has a higher chance of fracturing after device removal compared to the tibial surgery. So it took a longer time until bone solidification. So we ended up with lengthening of 10cm from the 1st surgery and an additional 10cm from the 2nd surgery. How powerful is medicine!
Before she received the surgery, patients had to pay a lot of the surgery because there was no insurance coverage. But better benefits are being developed now, so things will be even better in the future. Another problem children like Hye-In is that they can’t clean after themselves after using the bathroom. So some children schedule the 2nd surgery for arm lengthening. But because she seemed to be okay, we scheduled it for the latest one.
She was scheduled for the arm lengthening surgery 3 years after the 2nd surgery, by the time she was in 6th grade. Because it was an arm surgery, the IV needle had to be inserted on the foot, which was successful after 4 tries. It was hard to see her go through the pain.
She was discharged after 1 week, and bone formation was excellent. Because it was summer, she had to expose her arms. But luckily, Mrs. X gave me the poncho her daughter used to use. “I appreciate it, Mrs. X!”
Since the legs were lengthened, the arms also had to be operated to keep the balance in the body. The arms were going to be operated only once in the upper part. If the surgery was done twice both in upper and lower power, her arms would have looked way too long! Luckily we had no side effects after the arm surgery. Later we found out that problems rarely occur after arm surgeries.
Even after all the surgical procedures, the height difference between her and her friends is quite obvious. It breaks my heart but what can I do about it! But she still gained lots of confidence and friends throughout the process.
The biggest loss is that we babied and spoiled her too much that it’s gotten to a point where it has become hard to take control her. So I would like to tell the parents to be strong and firm. Parents are usually most worried about their children adapting in society and in school, but I could indirectly sense that they also try to be strong and firm in their own way.
I was worried about her going to middle school. I wasn’t sure if she was going to get along with children from different elementary schools, but she seemed to get along with them. Maybe I shouldn’t worry so much anymore.
Now she is into drawing cartoon and gets attention from her friends. I am quite relieved to see that she is getting along with other children.
I wish management would be followed up right after the surgery. For example, the patient could go back to having back pain, bowing of the legs, and leg length discrepancy even after a successful surgery. Anyways, I felt the process was lacking 50% because rehabilitation management wasn’t continuously followed up after the surgery.
Older children can make it through with their own will, but little children need their parents’ patience and will as well, especially because this process requires a long duration. Right now we are not able to go to the exercise therapies regularly, which is a big burden in my heart. But I am going to try to find a way.
There can never be only good things or only bad things after a surgery. You will lose some as you gain some. There is no right answer. It depends on how the person decides and judges where his priority is.
Good luck to all pediatric patients.
Also, good luck to their parents.
We love you.
[Congenital diseases] Mothers, be strong!
My second daughter was born when my first child was in middle school. There was a 15 year age gap, I can’t even describe how happy we were after her birth, and our family was full with laughter every day.
Because I was working when my first child was born, he was raised by my mother. But after I gave birth to the second child, I quit my job and became a housewife. It was tiring being busy with a child all the time, but it was fun at the same time. One day when I was massaging her legs, I felt that her legs felt softer unlike my first child. So I asked a doctor about her foot angle when we were at a pediatric hospital for her vaccination shots. He said that it was hard to tell because she was still too young. He told us to come back for an examination after her 1st birthday.
Finally her 1st birthday came, and we went to the hospital for her vaccinations again. He reluctantly told us that her diagnosis was “Achondroplasia.” What in the world is “Achondroplasia”? I was already out of my mind when we heard the exact diagnosis. I could not believe it! How could this happen when both my husband and I are normal? I had heard that mutations did occur a lot maybe because of the environment, but I didn’t know what to do.
Starting from a university hospital near our house, I visited several big hospitals, but the diagnoses were all the same. Her symptoms were like this. All the bone segments in the arms, legs, and fingers were very short and fat. Also the skin around the joints was rubbing against each side causing inflammation. I also noticed that her legs were bowing as she grew. We went to spirit therapy and received hormone therapy injections, but I heard hormone therapy was quite ineffective to people with achondroplasia.
At that time, I got to watch a show called “4 Little Giant Brothers” on TV, and went to meet Professor Song at Gyeong Sang University Hospital with my husband. The consensus was that she should receive the surgery when she was 7~8 years old, because she was too young then. We came back to Seoul after hearing that not so satisfying but rather relieving answer.
When I was raising Hye-In, I took her to everywhere I went. She didn’t care much about people starting at her, perhaps because she was still too young, and people didn’t care much about her height since she was little. But I couldn’t do anything about the reaction people showed after they heard her age. Furthermore, the bowing of her legs was becoming more noticeable, and didn’t want to walk too much because of too much pain.
Hye-In entered elementary school when she was 7. I became one of the members in the “board of parents” and did a lot of activities with other mothers and children. Although it was tiring, it felt rewarding to see Hye-In get close and blend with her friends naturally.
Now it was time for decision. Because she couldn’t take hot weather too well, my husband and I decided to have the surgery in the winter. Luckily, Professor had moved from Gyeong Sang University Hospital to Korea University Hospital, so she was able to have the surgery in Seoul.
The first thing that needed to be done was the Ilizarov surgery, which corrects the bowing of the legs and lengthens the leg at the same time. It was done by cutting the calf bone in the middle and correcting the bowing. How interesting is that new bone can form in between the gap!
She was hospitalized two days prior to the surgery and on the day of surgery, our family gathered together with praying heart. We were relieved to hear that the surgery had gone well, and were anxiously waiting for her to come out of the recovery room. We finally saw her coming out of the recovery room. But we were totally shocked.
Her legs looked really fat with the bandages wrapped around her legs. It was later when we found out that patients come out of the surgery with the Ilizarov device put on their legs. Because we had no idea about it, I was just completely shocked to see such image. Her legs were as big as her body.
When we went up to the ward, everyone was anxiously talking to her, so that she didn’t fall asleep. She couldn’t eat anything until let out gas. So it was painful seeing her not being able to eat when she was starving. So everyone started clapping when she finally let out gas. But she said she had no appetite and didn’t eat a lot, perhaps because of too much pain. 3~4 days later, they took off the bandages, and along started disinfection and lengthening.
We were supposed to lengthen 1mm a day, and it was going to take exactly 100 days for 10cm of lengthening in total. But it was going to be 100 days without any problems. Forgetting to lengthen or bone union during the process was going to prolong the duration. If I took all these details and problems into consideration, it was going to take about 3 months until lengthening was finished.
They told me to lengthen the device after teaching me how to do it the first time. There were so many places I had to lengthen that I often got confused whenever people talked to me or I got a phone call and couldn’t remember how much and which place I had to lengthen next. 5 days after the surgery, other than taking antibiotics and painkillers at the hospital, it was all mothers’ responsibility to lengthen and disinfect. So we talked about hospital discharge and came home after a week.
Oh! Another thing that I noticed the patients need before the surgery was their underwear. It is because they can’t put on their underwear after the surgery because of the Ilizarov device. I had a hard time making adjustable panties during hospitalization.
Mothers, be strong!
It was good to be back home, but taking care of a patient on top of all the housework I had to do was a mental and physical battle. When she needed to use the bathroom, I put her on a children’s potty and put her back to bed when she was done. It would have been tougher if she was bigger or I was weaker. I really think us mothers need to work out as well.
Hye-In also felt that diligent exercise was necessary for good bone growth. She had always been an active kid even at home, so we didn’t have much problem with bone growth. But because there was limit to how much structures around the bone could lengthen, she developed equinus deformity, which had to be corrected with a surgery.
When she got out of the surgery, I was once again shocked by the image – she had several pins coming out of her feet. We couldn’t make it too obvious to Hye-In but we were all saddened that she had to go through so much pain. She had to wear correction shoes during the lengthening process but often complained that they hurt. No I regret that I wasn’t stronger and pushed her more.
Mothers! Be strong! After the winter vacation, she started using crutches at school. So many of her friends were willing to help her, which made them naturally get close to each other. I could feel that her confidence level was going up. Days passed by with daily lengthening and disinfection and regular outpatient visits. Now we were done with lengthening, and just had to wait for bone to solidify.
Hye-In got really scared on the day we were scheduled to have the Ilizarov device removed. She screamed and cried out so loud after she went into a room for removal, and I was outside waiting anxiously. When she came out, she was drenched in sweat. She said it wasn’t as painful as she thought, but didn’t like the feeling when the device was touching the bone.
She put on a cast for about a month after that. Her leg was itchy so she asked me for some disposable chopsticks then scratched the itchy areas. She drew some pictures and wrote things on the cast and spent her ink cast days rather pleasantly. But once again, she got scared and started screaming before she even went into the room for cast removal. I was embarrassed and felt sorry for the people around us. She said she was just afraid of the machine sound.
We were done with everything, and her once bowed legs looked straight and long. She used to look chubby before the surgery but now she looked better, thanks to her loss of appetite after the first surgery. Not only Hye-In, but everyone around were happy for her.
This is how the 6-month long primary surgery ended. More than anything, I was satisfied with the fact that she had gained her self-confidence and became closer with her friends.
The 2nd surgery for femoral lengthening was done 1 year and 6 months after the first surgery. The surgery started at 9 AM and ended at 11 AM, which means the surgery was successfully done in 2 hours. She didn’t want IV painkiller so she just had painkiller shots from time to time. Two days after the surgery, she was screaming once again when she was getting the bandages removed. “What an exaggerator!” I thought, even though I could feel her pain.
Rehabilitation started right after, of course, along with screaming and shouting.
She must have been really tired from rehabilitation; she would just fall asleep right after she came upstairs. We started lengthening after a week. This time, I had to lengthen only once place, which was much easier than the previous surgery. The exercise was done with walkers first, then with crutches. We were able to go home after 2 weeks.
About 2 months later, she had problem straightening her back as a side effect, so she received another surgery for disconnecting the muscle above the calf. But she was having pain on her right calf. When I told the professor about the pain, he said the tendon could have been damaged during the surgery. He told us not to worry as it would heal as time passes by. It took a while, but her leg came to normal.
One good thing is that she didn’t have as many side effects as the other patients who had surgeries around the same time. I thought follow-up could have been not good enough due to a large number of operated patients.
She started going to school about 2 months after the surgery. She used a wheelchair at school just be cautious, and left the wheelchair at school when I picked her from the school. All her kind friends wanted to help her with pushing the wheelchair. She was also talented in origami and drawing pictures. According to her, she was popular in arts and craft class, and was surrounded by children during those hours. I was happy that she seemed to have a good time at school.
Just like in the 1st surgery, we had a total lengthening of 10cm after daily 1mm lengthening. The same procedure of lengthening – bone solidification – device removal – putting on cast was repeated just like after the 1st surgery. She was once again afraid of taking out the device, but she had a smile on her face when she was coming out of the room.
The “femur” has a higher chance of fracturing after device removal compared to the tibial surgery. So it took a longer time until bone solidification. So we ended up with lengthening of 10cm from the 1st surgery and an additional 10cm from the 2nd surgery. How powerful is medicine!
Before she received the surgery, patients had to pay a lot of the surgery because there was no insurance coverage. But better benefits are being developed now, so things will be even better in the future. Another problem children like Hye-In is that they can’t clean after themselves after using the bathroom. So some children schedule the 2nd surgery for arm lengthening. But because she seemed to be okay, we scheduled it for the latest one.
She was scheduled for the arm lengthening surgery 3 years after the 2nd surgery, by the time she was in 6th grade. Because it was an arm surgery, the IV needle had to be inserted on the foot, which was successful after 4 tries. It was hard to see her go through the pain.
She was discharged after 1 week, and bone formation was excellent. Because it was summer, she had to expose her arms. But luckily, Mrs. X gave me the poncho her daughter used to use. “I appreciate it, Mrs. X!”
Since the legs were lengthened, the arms also had to be operated to keep the balance in the body. The arms were going to be operated only once in the upper part. If the surgery was done twice both in upper and lower power, her arms would have looked way too long! Luckily we had no side effects after the arm surgery. Later we found out that problems rarely occur after arm surgeries.
Even after all the surgical procedures, the height difference between her and her friends is quite obvious. It breaks my heart but what can I do about it! But she still gained lots of confidence and friends throughout the process.
The biggest loss is that we babied and spoiled her too much that it’s gotten to a point where it has become hard to take control her. So I would like to tell the parents to be strong and firm. Parents are usually most worried about their children adapting in society and in school, but I could indirectly sense that they also try to be strong and firm in their own way.
I was worried about her going to middle school. I wasn’t sure if she was going to get along with children from different elementary schools, but she seemed to get along with them. Maybe I shouldn’t worry so much anymore.
Now she is into drawing cartoon and gets attention from her friends. I am quite relieved to see that she is getting along with other children.
I wish management would be followed up right after the surgery. For example, the patient could go back to having back pain, bowing of the legs, and leg length discrepancy even after a successful surgery. Anyways, I felt the process was lacking 50% because rehabilitation management wasn’t continuously followed up after the surgery.
Older children can make it through with their own will, but little children need their parents’ patience and will as well, especially because this process requires a long duration. Right now we are not able to go to the exercise therapies regularly, which is a big burden in my heart. But I am going to try to find a way.
There can never be only good things or only bad things after a surgery. You will lose some as you gain some. There is no right answer. It depends on how the person decides and judges where his priority is.
Good luck to all pediatric patients.
Also, good luck to their parents.
We love you.