Pediatric dwarfism clinic
Park Jeong-Hyeon (Kwon Su-Ji’s mother)
I think I first need to talk about the time when I was pregnant with Su-Ji, and about to move my OBGYN hospital to another one. I was still working after I was pregnant, so I went to M Hospital, which was more convenient for me to go from my work. This hospital was a famous OBGYN hospital in Busan. But with the thought of breastfeeding and natural delivery, I moved to L hospital on the 7th month.
Both hospitals were definitely famous hospitals in Busan, but L Hospital was famous for recommending natural delivery and breastfeeding. As far as I know, the mother can get surgery if she wants and there is no special program for breastfeeding.
So I got my documents from M Hospital and went to L Hospital around 8th month. If I had gone to L Hospital since the beginning, I could have known about it earlier. If I did, Su-Ji might not be in this world right now. Anyways, I went to the see the doctor at the new hospital, he found my chart very strange and did all kinds of stuff like talk to the head doctor and look up a book.
The doctor asked me if the records were wrong, because the height shows the same value as 4 weeks ago. All the genetic and pregnancy tests were all done at M Hospital, but they said there was no problem. Furthermore, when I asked them if the legs were shorter relative to the duration, the answer I got was “she will grow taller once she’s born.” Who in the world believes in such words these days? So we found out that our child is not normal on the first day we went to L Hospital.
When I went there one week after and two weeks after, they told me the condition was the same. They told me that the baby could be born a dwarf.
We were totally shocked. I remember the nurse from M Hospital saying, “The baby will grow taller once she is born” with a smiling face. It was something totally unexpected. I was a loss for words. On top of that, they said the baby was upside down and there wasn’t enough amniotic fluid. They told me that I have to do a C-section, even though I had more than 15 days until the due date.
The next day, I got ready for hospitalization, and had the surgery 3 days later. I was very anxious and doubtful. I wonder if that was the reason. But all of a sudden, I heard nurses whispering to each other “Oh no, does the mother know about this?”
I was so shocked to hear them talking. I was all ears without even opening my eyes. It sounded like the baby had died during birth. I was really scared. I wanted to get up and asked them if the baby really died during birth. What if it was the truth….
But I couldn’t get my body up and I felt like falling from the narrow bed. No one showed any response even when I shouted. A bit later, the nurses told me it was ok and dragged my bed to some place. But I was so afraid of falling from the narrow bed. I heard my husband’s voice and asked him for help, to hug me, but he didn’t hear me nor hug me. I can’t describe how scared I was at that moment.
Luckily, the baby was alive when I returned to the ward. She was sound asleep with her eyes tightly closed, not knowing about her mother’s fear. Thank goodness. I was happy with the fact that the baby was alive, what she looked like was not important at all. Also, the doctor in charge happily told me that the baby was probably not a dwarf. But he said we should still wait and see.
During the 1 week at the hospital and 2 weeks at the postpartum care center, no one thought Su-Ji was a dwarf. They just thought she got the flat back of the head after her father. My husband is flat in the back and the front of the head but he is 193cm tall. But every month we went to the hospital for a checkup, she didn’t really grow taller but her head circumference increases twice as much as the average value. Later, I found out online that this condition is called hydrocephaly.
5 months after birth, I went to the doctor at the postpartum center and asked him to refer to another doctor. After some examinations with him, the CT came out to be normal. Su-Ji was faster than other kids in everything. She was fast in crawling, and before she was even able to stretch her back, she stood up in 7th month, and walking in 8th month. But we weren’t suspicious at all. When we went to the clinic 3 months later, they said there was no problem in the brain, but should take a picture of the spine.
They said the shape of the spine and the pelvic bone was different than normal, that they think it could be dwarfism. I didn’t know what it really meant, but he asked me if the doctors at OBGYN didn’t tell us anything about it. He just told me to acknowledge the disability and live with it. He also told me to come every 3 months and check for hydrocephaly. I wanted to know if there was any possible way of treatment or surgery, but he said there wasn’t at all. He told me to accept it and live with it, as if he was talking about common cold.
I think that must have been the day I cried the most in my life. When I was pregnant, I heard that “there is a possibility”, but I wasn’t too concerned about it then. It was just a possibility,not reality. I cried so much in the hospital hallway, not caring at all about people around me think. My mom was the same. My brother tried to console me, but it didn’t help.
I felt like the sky was collapsing on me. I had no thoughts, no hope. What they told me at B hospital, that there was no solution for this, sounded ridiculous, but it was true. I asked them if asking for help in Seoul would make any difference, but they said it would be the same and that we just have to accept it. But I couldn’t just accept it and not do anything about it. I had to accept it, but also look for a way to have her treated. After online search, I tried to get an appointment at Y Hospital, but I couldn’t. So I went back to L Hospital again, and consulted with a doctor whose specialization is in premature babies.
He was from Seoul National University, so I hoped he would know something better. I thought maybe he could refer me to a hospital in Seoul. But he told me about the growth hormone therapy. He said the baby who received the therapy earliest worldwide was in his 14th month, but Su-Ji was only 8 months old. So he said we should wait until she turns 1. So she received it for 10 months starting on her first birthday.
There was no response the first month. But she grew 1cm on the 2nd month. No response on the 3rd month. So we increased the dosage compared what would be given to normal patients on the 4th month, so she grew 1 more centimeter. The next month, there was no response again after the same dosage. So we increased the dosage once again, which yielded growth of another centimeter.
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