In desperate search for some explanation of Robbie's rare condition, family connected us to Schriners Children's Hospital in Sacramento. In addition to a medical summary, we gathered all labs, MRIs, and X-rays taken from his Birth to 5 months of age; off they went to Sacramento. It took us about 2 months before we heard back from them and another 2 months before we walked in the through those hospital doors. We were nervous, yet optomistic about what type of treatments they could offer. The doctor walked in with her assistant and other doctors doing their residency. She examined Robbie, she talked in medical terminology to her medical staff and turned to us and without skipping a beat or breath, She stated " we recommend a foot amputation."
Our heart sank, we were left speechless. All I remember was embracing my son as tight as I could and given a referral to see the pediatric orthopedic surgeon.
Few months went by before we met with the surgeon. He was pleasant, more empathetic and sat with us. He met us at our level, understood our fears and concerns. He asked us questions about our son's condition. He wanted to know what we knew about the procedure recommendations for Robbie. Once we exchanged opinions and perceptions or lack of, he began to tell us what he can do to help in slowing down the overgrowth and help Robbie gain the best quality of life. He was honest and forthcoming when he said that this procedure was NOT a solution. By removing his right foot would allow him to have full function with out having to carry the extra weight of an oversized, overgrown foot.
One important concept he made sure we understood, AMPUTATION IT IS NOT A SOLUTION. While his right foot would no longer hinder his ability to ambulated safely, the girth of his entire leg would most likely continue its course and may NOT stop getting bigger. And he explained why.
The procedure consist of removal of his foot bones and tissue up to the ankle. They will preserve the heel skin as it will continue to be utilized as weight bearing skin. That part of the skin is tougher and he would be able to talk on it with out a prosthetic, if needed, and be
Okay. During the same procedure, they would remove the bottom growth plate. The growth plate is the area of growing tissue near the ends of the long bones. Each long bone has at least two growth plates: one at each end. The growth plate determines the future length and shape of the mature bone. By removing the bottom growth plate near the ankle, it would help Robbie with the current length discrepancy. It would allow for the left leg to catch up with the right, if you will.
No one knows if this RARE condition will ever slow down or stop, a second surgery to remove the other growth plates will have to take place closer to adulthood. Thus, stoppong the bone growth completely. (Emphasis on stopping the bone growth only.)
He explain that the bone growth could some how be managed by the removal of the growth plates, but that would not be the case with the muscles and tissue on his right leg. They (muscle and tissue) have been programmed since conception to trouble shoot signals on his right leg and foot at a much more rapid speed than the rest of his other body parts. Thus, causing a segmental overgrowth.
My husband shared with me once, that the moment Robbie was born and saw his right foot, he had a gut feeling that we would be face with the decision to amputate his foot. And he was absolutely right, he had months to come to terms with this possibility, of course, I DIDN'T. The surgeon knew it. He sat with us and answered every single questions, sometimes twice. He was patient, he was kind. He recommended for us to go home, process the overwhelming information, and for us as a couple, as parents to Robbie, make the a decision in the best interest to our HaPpY bAbY bOy.
Our next appointment was schedule towards the end of May 2017.
May roled around, My husband had already made up his mind and was waiting on me to come around. Deep down, I knew it was something that had to be done, specially after witnessing the rapid speed his right foot had and continues to grow.
The baby and I met with the surgeon our own. He sat with me, reviewed the procedure again, answered all my questions. He acknowledged my fears and concerns. He understood where I was coming. He also acknowledged that that particular appointment was more for my comfort than anything else. We talked about how Steve had come to terms with the facts. He helped me realized that it didn't mean that Steve wasn't grieving, that infact he was but in different ways.
Then the question arose: "Mrs. Gomez, how should we proceed? Please know that there is a process to get a surgery date and at any point you and your husband may delay the surgery or decide not to go through with it."
I bowed my head, said a small prayer, and I agreed in moving forward.
At that point I don't remember anything but being told that Robbie would need to see their pediatrician for a surgical clearance;!which would include labs and X-rays. The earliest surgical date would be in September. I was asked to go home and wait for the scheduler for an appointment to see the pediatrician and surgery would follow within 30 days after that.
Three weeks ago, we got that dreaded call. Robbie is scheduled to see Shriners Pediatrician for clearance towards the end of August.
No parent should make a decision that will impact the rest of their child's life. At the end of it all, all I want Robbie to know, understand, and feel that we fought, we advocated, we searched for answers and made the upmost best decision on his behalf.
