Pediatric dwarfism clinic
We asked for help from professor Song for the severe tip toe walking that occurred after an operation done at a local hospital in Seoul.
Date of Birth: April 2008 / Female
July 14, 2014
Our daughter was born with achondroplasia in April, 2008. She recovered from a successful operation for her tip toeing walking, which occurred after the limb lengthening surgery done at a local hospital. Although with her braces on, she can now finally sleep peacefully after the second rounds of surgery performed in Korea University Guro Hospital, in May 2014.
We are writing this letter hoping that it could be helpful to the parents like us, whose children has achondroplasia.
In 2010, our child was diagnosed with the disease named Achondroplasia. In this the person’s height remains very short and is also accompanied with many deformities of both legs and upper limbs. So after knowing the diagnosis, the first step we took was to search on the internet, for the best possible ways to get her grow taller by whatever means possible and we want her to be as tall as comfortably possible. I am sure other parents would also think in a similar fashion and search some way out of this problem, like we did as parents. We only hoped that our daughter grow tall according to her age before she enters elementary school, so that she can get along well with her friends, and she is self-confident with her social and personal image. We searched all over the internet to find the doctor who could perform the surgery for limb lengthening for Jimin. We did not realize at that point of time, that our hasty actions to make her grow taller would result in a very long bypass, so that we can finally settle in happiness. Hence, we would like to share our story with other parents who are in similar situation like we were in.
It was 2011, when we visited Dr. Song’s clinic in Guro hospital for the first time. He said that best period to perform surgery would be after six years age. We were not satisfied with his opinion, as we wanted it to be get it done as early as possible. After few more visits, we didn't follow up with him for further treatment. We started searching throughout the internet for other ways to get the surgery done earlier than what he suggested, only to find out lately that our decision was unwise and faulty.
In 2013, we visited a local hospital in Seoul, where the doctor agreed to perform the limb lengthening surgery for young Jimin. The operation was done in April that year. Jimin was 4.5 years old.
Treating doctor recommended that she should walk as much as she can and should follow proper rehabilitation to minimize the side-effects of lengthening such as tip-toe walking, we helped her and were constantly after her to follow doctor’s suggestions. But however, Jimin landed up in tip-toeing gait even after our and her best efforts. It seemed that the muscles were too slow to follow rapid lengthening of her bones.
Things got worse when she developed sores on both of her soles. Doctors told us that Jimin should stop the rehabilitation until she recovers from the sores.
Tip-toe walking worsened with every passing day, to an extent that now her feet were not fitting in her previous braces. Even at this point, treating doctor at the local hospital did not advice any alternative suggestions to decrease that and instead he kept on saying that we should keep working on the rehabilitation. We are not sure that whether correcting the problem at this point, would make her any better or will worsen the situation? Doctor simply told us that if the symptoms persist longer, he can manage it by lengthening the muscle by tearing it apart to some tolerable extent.
In November, 2013, Jimin was discharged from the hospital after removal of the external fixators from her lower leg, still with her tip-toes. Then after few days after we came back home, we found out that her left leg (the operated side) was fractured. We went back to the hospital and the external fixator was reapplied.
In March 2014, the doctor removed her external fixators again, but the left leg got fractured once again for the second time. This time, only splint was given to immobilize the fracture, so that the bones remain aligned.
The problem of tip-toeing did not seem to resolve even after two incidents of fractures on the operated leg and endless massage and rehabilitation for her legs and feet from her mother.
During all these procedures, we finally got suspicious about our decision.
In May, we made up our mind and visited Dr. Song’s clinic again, with the splint on Jimin’s leg. He said that the operated leg was bent and there was severe osteoporosis (bones were very weak) because Jimin, could not exercise and was not walking since such a long period of time.
Dr. Song operated on her to correct Jimin’s bent leg and her tip-toe. In July, he removed the fixators for her tip-toe walking, and he anticipates to remove Jimin’s external fixators next month (in August).
Currently, it seems that Jimin would be able to walk soon after the removal of the external fixators. We are so happy to see her exercising hard to walk soon.
The past year has been very long, tiring and painful for our family. We realized that hasty decisions made by the parents can make their children suffer and that only a “good” hospital and experienced doctor can take a good care after surgeries and can respond promptly to any side effect that can happen anytime post-surgery.
My daughter is very excited about her getting taller and she doesn’t seem to care about the wounds in her legs caused after several operations. She makes us feel all more guilty and sorry for her.
We do not want to blame the doctor in the local hospital; we are sure that he did his best. But it was us, who made all the decisions, and Jimin was only following them. We think that as a parent we should be more responsible and hence we think that they we should be more cautious and even more informed. We hope our story will be helpful to other parents who are going through difficult times like us what we passed after Jimin’s diagnosis.
Lastly, we sincerely appreciate Dr. Song and the whole family of Guro hospital who made us turn from despair to hope.
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