The story of a child born with a condition as rare as Tibial Hemimelia
Tibial Hemimelia (TH) is defined by the Pediatric Orthopedic Society Of North America (POSNA) as a congenital deficiency of the tibia. In some cases, only a mild shortening of the tibia is observed and in the most severe instances the tibia is absent in its entirety.
To simply explain, there are two (2) major bones below the knee; the tibia and the fibula. The absence or shortness of the tibia results in Tibial Hemimelia (TH). This hampers or prevents the child from walking. According to available statistics, the condition only affects one in a million babies born worldwide. A child can either be born with TH of the right or left leg or be afflicted in both legs which is described as bilateral TH.
I live in Jamaica, an island populated by a little under 3 million people. Before giving birth to my son in 2015 I had no idea TH even existed. Now I think I am somewhat of an expert in my understanding of this rare phenomena.
Rafael was delivered in October 2015 via c-section because my blood-pressure was too high and contractions were lowering his heart rate. I noticed his leg when they pulled him out before I even took a good look at his face. My heart sank as I knew something was wrong.
My immediate thought was how do we fix it.
When I finally got to see his face I knew this little angel was special, not because of his deformed limb but because the spirit within him said, ‘I am aware and strong.’ He is now two (2) years old and his level of awareness, his capabilities, strength and courage despite his challenge astounds me every single day. Amazingly his strength has inspired me to be a mom on a mission to save his leg.
The day after his birth the orthopedic surgeons at the hospital took him to examine his leg and do a series of x-rays. They reported that as far as they could see his skeletal system was sound and his only challenge was the TH that affected his right leg.
Apparently, TH is sometimes accompanied by complications of the hip and or spine, but Rafael was only affected in his right leg.
We thanked god for small mercies.
The practice of amputating the leg when a child is born with TH is still practiced throughout the world and that was the option presented to us here in Jamaica.
In 2018, when there is so much advancement in technology, the practice of amputation is quite archaic and in my opinion barbaric. If a child is born with a deficiency that can be corrected, why advocate for the loss of his limb?
As helpful as wheelchairs and prosthetics can be, nothing beats a child’s own functioning limb which can be fixed by corrective surgery and limb lengthening.
Thanks to our pediatrician at the time, who believed that there ought to be a better way than amputation, and the leading orthopedic specialist at the Paley Institute in Florida who also share that view. Things are changing and we hope the change can grow to reach every child born as rare as Rafael.
Corrective surgery for our Rafael will ensure that his foot is re-positioned to the correct angle for walking, then the limb lengthening will help to stretch his bone to match the length of his left leg. As he grows his bone will grow in the correct position and possibly match the length of his other leg or be adjusted via bone lengthening surgery if necessary.
A congenital deficiency like TH is often assumed to be hereditary. However, neither myself nor Rafael’s dad has any knowledge of a history of this condition in either of our families.
Most days he is pushed around in a stroller whenever we go outside. While inside he’s able to hobble around on his uneven legs or sometimes he just falls to his knees to move around. He climbs everything he can and has considerable upper body strength. He’s no different from your typical two-year-old who is full of wonder and excitement with a love for learning.
As he becomes more aware we can see that he knows something is wrong and sometimes he gets melancholic, but most times he’s a happy playful child.
Having a child with TH can be financially draining especially when the condition is unexpected. In addition to the daily expenses of food and utilities, clothing and shelter, there are doctors visits and vaccines, travel and accommodation to see specialists, orthopedic specialist costs, testing and evaluations. This is quite a burden but we press on as our goal is to have our son walking.
Our focus is to raise the money for the first and most critical surgery which is quite costly. Our family cannot afford it at this time but we won’t let that stop us. We look at the face of determination every day when we see our little Rafael. So we are on a fundraising campaign and look forward to be joined by the kind hearts of our human family to Save Rafael’s Leg.
Limitations of Funding For Caribbean Children
We spend quite a while researching where we could get help for our son’s condition. Most charities that we came across did not offer medical assistance funding for children with orthopedic conditions. Their focus is mainly on heart conditions, kidney dysfunctions and cancer which are more common among the pediatric population.
We’ve reached out to charities, the news media and other philanthropic entities to tell them our story, but to date we’ve had very limited success. Our family is quite small so our crowdfunding efforts have not grown much.
Despite this we continue to move forward with a knowing that we will get the assistance needed to save his leg.
Presently there are very few institutions that offer corrective treatment for TH but with an increase in public awareness and proper funding, treatment for these orthopedic conditions can become routine and affordable once the expertise and capacity is built up over time.
After all is done and our son is walking our family looks forward to starting a charity to support families and children born with rare orthopedic conditions as they seek treatment for their little ones.
Odd Coincidences On Our Journey
Here we are in Jamaica not knowing much on TH and working to save our son’s leg. While on our journey, we came in contact with a Californian mother, her son’s name is also Rafael, he was born in 2015 five (5) days after our Rafael, he has the condition called Fibular Hemimelia (the Fibula is shorter than it needs to be hampering the functionality of the child’s leg), and doctors’ recommendation is that she amputate her son’s leg.
We are asking for the assistance and generosity of anyone willing and able to help us share our story to get our angel Rafael the help he needs. All funding goes directly to the hospital as the aim is to heal our son.
We are extremely grateful for all the help we receive.
Sherika Harris (Mother, Writer)
Pediatric Orthopedic Society of North America (POSNA) – May 2018
The Paley Orthopedic & Spine Institute – Tibial Hemimelia Classification – May 2018