[Congenital diseases] Se-Jin immigrated to Canada
Se-Jin! Play and run around like a tiger!
“The baby’s limb lengths are shorter than normal. You should go to a bigger hospital and check it.”
That one phrase of his stirred up my peaceful day like the whirlwind after the ultrasound examination in my 6th month of pregnancy. I know that life doesn’t always go in the direction we want it to go, but it wasn’t something I couldn’t be concerned about this time. So I went to a big hospital with anxiety and at the end of examination he said,
“Looking at the length of the baby’s limbs, I suspect either Down Syndrome or achondroplasia.” My husband tried to console me saying, “Let’s be good parents, maybe the baby chose us to be his/her parents”. But I could not help but cry thinking of the agonizing days ahead of us.
Our baby, who was born in the year of tiger, was named Se-Jin (false name), which means “Play and run around like a tiger.” On a cold winter day 2 months after her birth, our baby had a seizure with foamy mouth and crossed yes. I thought it was just a cold, but it turned out that it was bacterial meningitis. The doctor said because the brain was filled with fluid, she could have died with blockage in medulla oblongata. Se-Jin came out of the surgery room wearing a container that eliminates the fluid in the brain on her head. But after 2 days of unconsciousness, the doctor said that there wasn’t too much hope.
She woke up 4 days after the surgery, but I couldn’t sleep but looked after the baby with pneumonia and repeated episodes of seizures. I needed to quickly take action when seizure started. At the neonatal intensive care unit, there were a lot of babies with serious diseases and their parents were all going through a difficult time. But their warm hearts helped me make it through those difficult times. We got encouraged by each other even more so because we were all in the same situation. We spent one moth in the neonatal intensive care unit.
The doctor explained that the mortality rate of this bacterial meningitis is 20% and even if she survives, it might lead to cognitive dysfunction, blindness, and seizures later in life, depending on how much and what part of the brain got affected. But he also told me not to worry too much because since she is still very little, another part of the brain could replace that part and develop. At that time, our biggest hope was for Se-Jin to come out of the hospital and have a normal life just like all the other people.
I am not sure it happens to all children with achondroplasia, but Se-Jin’s development was very slow in every way. I am not sure if it was the effect of bacterial meningitis or achondroplasia.
She started crawling very late compared to other babies. But maybe due to weakness in the bones, she couldn’t crawl with her knee. So she used her tummy and arms, dragging the lower part of the body. Walking, moving onto wearing underwear from diaper, and language development was very slow. At the age of 5, she was barely able to build simple phrases like “mommy, water”. I was deeply worried.
So she ended up going to school 1 year later than normal. I think it was a very good decision for her, who had delayed in physical and emotional development. Because as time passed by, she caught up in language development and was able to go to school with no problem
When she was a baby, she had another problem of being very prone to catching a cold. Once she caught a cold, she couldn’t stop coughing for several days. They said this couldn’t be cured with medicine, and even very skillful oriental clinicians couldn’t do anything about it. They also added that it was not asthma.
It was so painful knowing that that there was nothing I could do for a baby who had been coughing non-stop for some unknown reason. I could have even sold my spirit, if there was a way to stop her from coughing.
Recurrent colds led to chronic otitis media. When she was 7 years old, we went to G Hospital in Seoul to be treated for otitis media, and I asked the possible cause for non-stopping cough. We were able to find the answer after various examinations and tests. He said it was due to the imbalance between the respiratory tract in the throat and the development of the nose. He recommended a surgery for otitis media for symptomatic improvement. After the surgery which had to do with partially shaving off a part of throat and inner nose, she was able to escape from coughing hell.
When Se-Jin was big enough to go to child care, she was practicing ballet for a talent show. But she looked unstable with her inwardly bowed legs. Once, she even told me her legs were hurting from walking to the kindergarten, which was inside the apartment complex. When I was walking with her to kindergarten, and saw her from behind, her legs looked very unstable and as if they were going to break. At that time we had been going to a local hospital for regular checkups, but they said there was no doctor who can operate Se-Jin.
So we went to meet Professor Song, who was known for this type of surgery. I was deeply worried before we met him for initial examination because I absolutely had no idea about what to expect when I meet him.
She was 6 years old when she had the surgery. The image I saw after they removed the bandage was quite shocking. It looked extremely painful. Se-Jin couldn’t stop crying even with painkiller injection. I felt sorry for the patients in the same ward. So I walked around with her on a wheelchair in the hallway, trying to make her fall asleep.
1.5 months after the surgery, Se-Jin played well and rode a baby bicycle and a rocking horse with numerous pins inserted into her legs. While most achondroplasia patients have both of their legs bowed, Se-Jin had more bowing in one leg than the other. Only one leg was operated and corrected, so the duration between the surgery and recovery wasn’t that long overall.
After the pin was removed, the operated leg came out to be about 2cm longer than the other, causing her to limp. But it was relieving to see her legs straightened, which once used to look like they could break any time.
Autumn of her 2nd grade, we went to see Professor Song for a regular checkup, and he told us that we need another surgery. I was afraid of the surgery but after hearing that bone healing is faster during growth period, I didn’t see any choice. So many pins were inserted through the leg again and big rings were put on to stabilize all the pins.
She suffered from extreme pain for the next 3 days after the surgery. Painkillers were no use. She always had surgery on Monday and her pain seemed to go away around Wednesday. Se-Jin is quite overweight. So cleaning herself in the bathroom without touching the operated areas was one of the big problems too.
At that time, there was one angelic family in the same ward who were very helpful to us. One day, one of the caregivers made a suggestion to us. She taught us that it was more convenient for even girls to use boys’ urinals. This suggestion was really useful that I still remember it and am thankful for it.
One of the hardest things to do after the surgery is disinfection. To avoid infection, we had to clean the scar with alcohol. Every time the cotton ball touched the scar, she carried and shouted in pain. Whenever that happened, I started to wonder if she was going to be emotionally okay. Sometimes, we had inflammation even after thorough disinfection. We were able to overcome those threatening times by going to a nearby hospital and getting meticulous sterilization and prescription for antibiotics. I was extremely worried that inflammation would move onto the bones, but luckily that never happened.
It took almost 1 year for the lower legs to recover fully. Removing the pins means saying bye to restricted freedom, exhausting baths, and painful disinfection sessions. We felt refreshed, refreshed, and once again, refreshed.
Se-Jin immigrated to Canada
The period of freedom didn’t last very long. We started seriously considering if she should have another surgery on the upper part of the legs. We got to talk to several people who had received operation on upper legs – they all had different ideas and experience. Some people had to insert a metal nail into the bone because of delayed bone healing, and in the worst case, a few people felt so much pain in the waist that they had to get muscle graft from their thighs to their waist. On the other hand, there were also people who had quite smooth healing process after the surgery and acquired satisfying legs afterwards.
We pondered which would be the best decision for Se-Jin. If we left it as it is, there was going to a big imbalance between upper and lower legs. On top of that, we needed to make the decision fast because we didn’t want to miss her growth period, which is the optimal time for bone healing. It had been about 2 months since pin removal from the lower legs. It was going to heartbreaking to make a child who just was freed from disinfection and metal nails go through another operation. After considering the best option for Se-Jin, we decided to receive the surgery again.
It also took a year until pin removal from the upper legs. However, only one pin was able to be removed. The other leg had to wait until it became stronger. I don’t understand the two legs showed such different response when they were managed equally. One of Se-Jin’s symptomatic features was the hourglass-shaped thigh bone that didn’t thicken in the middle part.
Children with achondroplasia have trouble cleaning after themselves in the bathroom. When they are little, their family can help, but it is not something they can get help with for the rest of their lives! So we ended up deciding to have the arm surgery as well. If we were in a typical situation, we would have waited until the legs were fully recovered.
But at that time, we were planning on immigrating to Canada. We were worried if we were going to be able to meet an outstanding doctor like Professor Song. Because the leg fixator was not removed yet, it was difficult to give a bath to her and even clothe her. Because she had pins on both arms and legs, I had get custom made clothes with buttons spaced widely.
She started homeschooling online. But I still felt that she wasn’t getting enough education, and she also said that she missed spending time with her friends. The online homeschooling system allowed two-way communication between students and teachers. But the number of class hours was much smaller and I felt that the quality and technique of classes were very lacking.
The problematic leg pin was finally removed 1 year and 9 months later. This removal brought changes to her life. Now she was able to wash herself below her belly, so she showered by herself!
Despite our wish to immigrate to Canada after all her treatments were complete, we had to move to Canada without having the arm pin removed. Time is passing by but we are not sure if we will be able to find the right doctor for Se-Jin’s arm pin removal in Canada. In Korea, we had Professor Song to help us make even the hard decision about the surgery.
Because of Se-Jin’s surgery, our family had a hard time for 3 years. To get to the outpatient appointment, we took an early morning train at 6:57 AM, and then took a taxi; also torturous disinfection and bath sessions were not easy for us at all. But those tough times brought us together and made us stronger.
She would make a great teacher
I was thinking.
If there had been no doctor who could operate patients like Se-Jin, how would have Se-Jin’s life changed? She would probably have lived with bowed legs. The process throughout the surgery and recovery was not easy; but after all the surgeries, she is now 20cm taller than she used to be. Her once chubby figure looks a little thinner now and she can now turn on and off the light switch, which she was not able to reach before the surgery. She can also reach the washing basin.
Before the surgery, Se-Jin was very short. In the playground, she got furious whenever a little kid who was way younger than her thought they were the same age. We still have to go through the rehabilitation process, but the increase in height brought her confidence and helped her to have more positive mind.
So I am thankful to the doctors and everyone in the hospital who helped us make it through such a tough surgery. It is definitely not an easy thing to go through 9 surgeries at such a young age. I am always thankful to Se-Jin for overcoming all the pain with positive attitude.
Now she has 4 pins inserted in her both arms. On the way to school, where she walks to every day, she sometimes runs into gray colored wild bunnies with long legs. Is it because she had a long break from school? She says that she is excited about going to school each day. She says that she enjoys meeting her friends and teachers, as well as the occasional encounters with wild bunnies.
Her legs are still not strong enough and she has to rest on a bench in the park after walking half way to the school. But I think it is good daily exercise. I get a smile on my face whenever I think “I will let her take her swimming lessons and buy her pretty clothes.” With all these delightful expectations, I think our family is on its way to even bigger happiness.
She says that she wants to be a teacher when she grows up. Se-Jin as a teacher?
I think she’d make a great teacher!
[Congenital diseases] Se-Jin immigrated to Canada
Se-Jin! Play and run around like a tiger!
“The baby’s limb lengths are shorter than normal. You should go to a bigger hospital and check it.”
That one phrase of his stirred up my peaceful day like the whirlwind after the ultrasound examination in my 6th month of pregnancy. I know that life doesn’t always go in the direction we want it to go, but it wasn’t something I couldn’t be concerned about this time. So I went to a big hospital with anxiety and at the end of examination he said,
“Looking at the length of the baby’s limbs, I suspect either Down Syndrome or achondroplasia.” My husband tried to console me saying, “Let’s be good parents, maybe the baby chose us to be his/her parents”. But I could not help but cry thinking of the agonizing days ahead of us.
Our baby, who was born in the year of tiger, was named Se-Jin (false name), which means “Play and run around like a tiger.” On a cold winter day 2 months after her birth, our baby had a seizure with foamy mouth and crossed yes. I thought it was just a cold, but it turned out that it was bacterial meningitis. The doctor said because the brain was filled with fluid, she could have died with blockage in medulla oblongata. Se-Jin came out of the surgery room wearing a container that eliminates the fluid in the brain on her head. But after 2 days of unconsciousness, the doctor said that there wasn’t too much hope.
She woke up 4 days after the surgery, but I couldn’t sleep but looked after the baby with pneumonia and repeated episodes of seizures. I needed to quickly take action when seizure started. At the neonatal intensive care unit, there were a lot of babies with serious diseases and their parents were all going through a difficult time. But their warm hearts helped me make it through those difficult times. We got encouraged by each other even more so because we were all in the same situation. We spent one moth in the neonatal intensive care unit.
The doctor explained that the mortality rate of this bacterial meningitis is 20% and even if she survives, it might lead to cognitive dysfunction, blindness, and seizures later in life, depending on how much and what part of the brain got affected. But he also told me not to worry too much because since she is still very little, another part of the brain could replace that part and develop. At that time, our biggest hope was for Se-Jin to come out of the hospital and have a normal life just like all the other people.
I am not sure it happens to all children with achondroplasia, but Se-Jin’s development was very slow in every way. I am not sure if it was the effect of bacterial meningitis or achondroplasia.
She started crawling very late compared to other babies. But maybe due to weakness in the bones, she couldn’t crawl with her knee. So she used her tummy and arms, dragging the lower part of the body. Walking, moving onto wearing underwear from diaper, and language development was very slow. At the age of 5, she was barely able to build simple phrases like “mommy, water”. I was deeply worried.
So she ended up going to school 1 year later than normal. I think it was a very good decision for her, who had delayed in physical and emotional development. Because as time passed by, she caught up in language development and was able to go to school with no problem
When she was a baby, she had another problem of being very prone to catching a cold. Once she caught a cold, she couldn’t stop coughing for several days. They said this couldn’t be cured with medicine, and even very skillful oriental clinicians couldn’t do anything about it. They also added that it was not asthma.
It was so painful knowing that that there was nothing I could do for a baby who had been coughing non-stop for some unknown reason. I could have even sold my spirit, if there was a way to stop her from coughing.
Recurrent colds led to chronic otitis media. When she was 7 years old, we went to G Hospital in Seoul to be treated for otitis media, and I asked the possible cause for non-stopping cough. We were able to find the answer after various examinations and tests. He said it was due to the imbalance between the respiratory tract in the throat and the development of the nose. He recommended a surgery for otitis media for symptomatic improvement. After the surgery which had to do with partially shaving off a part of throat and inner nose, she was able to escape from coughing hell.
When Se-Jin was big enough to go to child care, she was practicing ballet for a talent show. But she looked unstable with her inwardly bowed legs. Once, she even told me her legs were hurting from walking to the kindergarten, which was inside the apartment complex. When I was walking with her to kindergarten, and saw her from behind, her legs looked very unstable and as if they were going to break. At that time we had been going to a local hospital for regular checkups, but they said there was no doctor who can operate Se-Jin.
So we went to meet Professor Song, who was known for this type of surgery. I was deeply worried before we met him for initial examination because I absolutely had no idea about what to expect when I meet him.
She was 6 years old when she had the surgery. The image I saw after they removed the bandage was quite shocking. It looked extremely painful. Se-Jin couldn’t stop crying even with painkiller injection. I felt sorry for the patients in the same ward. So I walked around with her on a wheelchair in the hallway, trying to make her fall asleep.
1.5 months after the surgery, Se-Jin played well and rode a baby bicycle and a rocking horse with numerous pins inserted into her legs. While most achondroplasia patients have both of their legs bowed, Se-Jin had more bowing in one leg than the other. Only one leg was operated and corrected, so the duration between the surgery and recovery wasn’t that long overall.
After the pin was removed, the operated leg came out to be about 2cm longer than the other, causing her to limp. But it was relieving to see her legs straightened, which once used to look like they could break any time.
Autumn of her 2nd grade, we went to see Professor Song for a regular checkup, and he told us that we need another surgery. I was afraid of the surgery but after hearing that bone healing is faster during growth period, I didn’t see any choice. So many pins were inserted through the leg again and big rings were put on to stabilize all the pins.
She suffered from extreme pain for the next 3 days after the surgery. Painkillers were no use. She always had surgery on Monday and her pain seemed to go away around Wednesday. Se-Jin is quite overweight. So cleaning herself in the bathroom without touching the operated areas was one of the big problems too.
At that time, there was one angelic family in the same ward who were very helpful to us. One day, one of the caregivers made a suggestion to us. She taught us that it was more convenient for even girls to use boys’ urinals. This suggestion was really useful that I still remember it and am thankful for it.
One of the hardest things to do after the surgery is disinfection. To avoid infection, we had to clean the scar with alcohol. Every time the cotton ball touched the scar, she carried and shouted in pain. Whenever that happened, I started to wonder if she was going to be emotionally okay. Sometimes, we had inflammation even after thorough disinfection. We were able to overcome those threatening times by going to a nearby hospital and getting meticulous sterilization and prescription for antibiotics. I was extremely worried that inflammation would move onto the bones, but luckily that never happened.
It took almost 1 year for the lower legs to recover fully. Removing the pins means saying bye to restricted freedom, exhausting baths, and painful disinfection sessions. We felt refreshed, refreshed, and once again, refreshed.
Se-Jin immigrated to Canada
The period of freedom didn’t last very long. We started seriously considering if she should have another surgery on the upper part of the legs. We got to talk to several people who had received operation on upper legs – they all had different ideas and experience. Some people had to insert a metal nail into the bone because of delayed bone healing, and in the worst case, a few people felt so much pain in the waist that they had to get muscle graft from their thighs to their waist. On the other hand, there were also people who had quite smooth healing process after the surgery and acquired satisfying legs afterwards.
We pondered which would be the best decision for Se-Jin. If we left it as it is, there was going to a big imbalance between upper and lower legs. On top of that, we needed to make the decision fast because we didn’t want to miss her growth period, which is the optimal time for bone healing. It had been about 2 months since pin removal from the lower legs. It was going to heartbreaking to make a child who just was freed from disinfection and metal nails go through another operation. After considering the best option for Se-Jin, we decided to receive the surgery again.
It also took a year until pin removal from the upper legs. However, only one pin was able to be removed. The other leg had to wait until it became stronger. I don’t understand the two legs showed such different response when they were managed equally. One of Se-Jin’s symptomatic features was the hourglass-shaped thigh bone that didn’t thicken in the middle part.
Children with achondroplasia have trouble cleaning after themselves in the bathroom. When they are little, their family can help, but it is not something they can get help with for the rest of their lives! So we ended up deciding to have the arm surgery as well. If we were in a typical situation, we would have waited until the legs were fully recovered.
But at that time, we were planning on immigrating to Canada. We were worried if we were going to be able to meet an outstanding doctor like Professor Song. Because the leg fixator was not removed yet, it was difficult to give a bath to her and even clothe her. Because she had pins on both arms and legs, I had get custom made clothes with buttons spaced widely.
She started homeschooling online. But I still felt that she wasn’t getting enough education, and she also said that she missed spending time with her friends. The online homeschooling system allowed two-way communication between students and teachers. But the number of class hours was much smaller and I felt that the quality and technique of classes were very lacking.
The problematic leg pin was finally removed 1 year and 9 months later. This removal brought changes to her life. Now she was able to wash herself below her belly, so she showered by herself!
Despite our wish to immigrate to Canada after all her treatments were complete, we had to move to Canada without having the arm pin removed. Time is passing by but we are not sure if we will be able to find the right doctor for Se-Jin’s arm pin removal in Canada. In Korea, we had Professor Song to help us make even the hard decision about the surgery.
Because of Se-Jin’s surgery, our family had a hard time for 3 years. To get to the outpatient appointment, we took an early morning train at 6:57 AM, and then took a taxi; also torturous disinfection and bath sessions were not easy for us at all. But those tough times brought us together and made us stronger.
She would make a great teacher
I was thinking.
If there had been no doctor who could operate patients like Se-Jin, how would have Se-Jin’s life changed? She would probably have lived with bowed legs. The process throughout the surgery and recovery was not easy; but after all the surgeries, she is now 20cm taller than she used to be. Her once chubby figure looks a little thinner now and she can now turn on and off the light switch, which she was not able to reach before the surgery. She can also reach the washing basin.
Before the surgery, Se-Jin was very short. In the playground, she got furious whenever a little kid who was way younger than her thought they were the same age. We still have to go through the rehabilitation process, but the increase in height brought her confidence and helped her to have more positive mind.
So I am thankful to the doctors and everyone in the hospital who helped us make it through such a tough surgery. It is definitely not an easy thing to go through 9 surgeries at such a young age. I am always thankful to Se-Jin for overcoming all the pain with positive attitude.
Now she has 4 pins inserted in her both arms. On the way to school, where she walks to every day, she sometimes runs into gray colored wild bunnies with long legs. Is it because she had a long break from school? She says that she is excited about going to school each day. She says that she enjoys meeting her friends and teachers, as well as the occasional encounters with wild bunnies.
Her legs are still not strong enough and she has to rest on a bench in the park after walking half way to the school. But I think it is good daily exercise. I get a smile on my face whenever I think “I will let her take her swimming lessons and buy her pretty clothes.” With all these delightful expectations, I think our family is on its way to even bigger happiness.
She says that she wants to be a teacher when she grows up. Se-Jin as a teacher?
I think she’d make a great teacher!