A letter written by Beverly (Rivers' mother) regarding Rivers' leg, 1981.
An original scan of Beverly's letter.
I'm typing a copy of what we found out today at the Children's Hospital and then xeroxing it so that I won't have to tell everyone separately.
First of all, it was a beautiful facility and both boys enjoyed themselves emmensely. (or however, you spell it...we're a "little" tired and my spelling and grammar may be off!) We walked into the main room and it was filled with about 500 varieties of giant stuffed animals. ..kangaroos with their pockets filled with baby kangaroos that were two feet big, many from age six, and was thrilled to introduce him around to the other stuffed animals. Funny how Rivers, usually so macho and grownup, re-discovered Mark when it was time to go to thehostpital.
The staff was very kind and used to dealing with children, and we saw many children with serious problems while in the waiting room. It put things in a different perspective when we saw others sufferings so much worse problems. And all the children seemed so cheerful.
Rivers had a one hour appointment with both a resident and a staff doctor, who was amazing. As you know, he has already seen two doctors and an orthopedist. These two were specialists - orthopedic pediatricians, or pediatric orthopedists, or something like that. And we were very impressed. The older one knew exactly what was wrong, and even made several predictions, such as the fact that with this "congenital femur somethingorother" you would expect normal external rotation and limited internal rotation of the right leg. He tested him and sure enough, it was obvious. There are several other characteristics that go along with it also. It is rare, but evidently a classic textbook case, and one that they want to use for "clinical screening" for their staff on June 2. That means that 5 staff docs, and 5 residents will examine him and discuss his case with us present, to get a combined opinion and for teaching of 5 or so interns. That is free, and sounds kind of fun, plus a nice way of getting more feedback and knowledge, so we said okay. So the final diagnosis and treatment plan will be formulated then.
As of know, tentatively, it looks like the condition is congenital, which means he has had it from birth, but not genetic, probably caused by something prenatally. It is mild compared to many they see, and while they won't make their official prediction until after the screening, it looks as though the approximate leg differential if left untreated may be around 6 centimeters (or three inches) altho it could be less...they didn't have time today to really calibrate the x-rays, plus they have to follow him a number of months to accurately predict it. They said this particular set of problems is the easiest to predict accurately. Right now the difference is 1 1/4 inches, and they will probably want to operate in about 1 and half years to scrape the epiphysical plate in the left leg above the knee to slow the growth of that leg so the legs will end up around equal when he is at full growth. However, they may change their mind while monitoring growth during that year and a half. We can all pray that the difference will begin to lessen in that time. If it comes under 3/4 of an inch they won't operate. Perhaps even if its under 1 inch. The greatest thing is that he doesn't have to wear orthopedic shoes! Just lifts of 1/2 inch! Thye threw around a lot more technical terms too, but its just too much to write in a letter. I am just so relieved their is no obvious thing wrong or diseased...just a slowness in the growth. Rivers is very happy about the year and a half too. It gives us time. Aloo that he doesn't have to wear the crazy shoes. And that we have a beautiful hospital to go to if he does have to thave the surgery.
If anything should change on June 2, we'll write you right away and let you know. Otherwise just assume all is well.
We love our new apartment...it's so homey, and quiet. Lilac trees in the yard, and right on the Mount Hope River. (seems appropriate, doesn't it?!) Tomorrow we leave or Cape Cod, and when we get back I start school in physical therapy. By the time Rivers has surgery, if indeed he does need it, maybe I can be his therapist!
Well, take care, everyone, and thanks for all your prayers and well wishes. We love you all.