You might think that having a child who has had a transplant would be an automatic qualifier for Early Intervention (EI). Sadly that would be a wrong assumption. Transplant is not one of the automatic qualifying diagnoses, yet. Hopefully in the future it will be.
In the meantime, the child still has to go through the evaluation process to qualify like all other children. This may be made a little easier if your child is a baby and is receiving services in the hospital pre-transplant and the pediatrician, or the transplant team can make the case for why services need to be continued, but again, it does not mean that the services will definitely be continued when the child goes in to the EI system. This should not dissuade you from going to your local Child and Family Connections (CFC) office to ask for an evaluation. The evaluation and the Individual Family Service Plan meeting is always free.
When your child has undergone transplant or is pre-transplant, there are a lot of different medications that they are on, as well as the possibility that they are on a ventilator, as well as needing to be bedridden much of the time. Due to these reasons, they may lose muscle tone, they may be at a critical time (in the case of babies) when speech is forming and they are on the ventilator and cannot use expressive language, this can cause a delay. In the case of children that are waiting on a heart transplant and are sedated, they are losing critical times that they should be learning how to be functionally playing with toys, learning expressive language, learning how to roll over, sit up and eventually crawl. All of this can lead to delays once they do get their lifesaving gift.
How EI can help
This is where the EI team comes in. Once the child has been discharged from the hospital, or sometimes after they have been lifted from isolation precautions in the hospital, the therapists can help the family members with helping your child regain those skills. A skilled speech and language pathologist can teach you how to safely help your child learn how to either bottle feed or nurse again if they are having trouble due to being on a nasogastric feeding tube (NG tube) for an extended period while waiting for their transplant. Or a physical therapist can come in and teach you how to help your child learn how to kick their legs again to get started on some movement and regain some muscles in their legs. These are essential skills that they may have lost due to needing to fight for their lives. When a child is fighting for their life waiting for a transplant, the necessary things like breathing, eating and sleeping are what takes precedence. Things like learning to talk lag behind breathing and need to be learned, or relearned at a later time.
Talk to Your Therapists
There are some things you will need to discuss with your therapists when they come into your home. Your therapist should already have your file and should be aware that your child is immunosuppressed and has had a transplant. But, it is always a good idea to talk to the therapist(s) first and remind them that if they are sick, even with a cold, you will need to have them reschedule. If your child even gets a cold, they could end up in the hospital. Some therapists bring their own bags of toys to play with your child with to help them learn. It helps to facilitate play with the child. You may or may not be comfortable with this since that bag of toys will travel to other children’s houses that that therapist sees. It is ok to ask the therapist to either use your toys that you have at home to play with, or alternately, to use wipes you provide to sanitize her toys before playing with your child. You can also request the therapist to take off his or her shoes before entering your home and to wash hands before playing with your child. These are all common requests and the therapists are trained to expect these discussions by their professional organizations. If your therapist is unwilling to work with these requests, it is well within your right to ask for a new therapist from your Service Coordinator (SC). This is your child’s health at risk. Washing your child’s hands after each session is also good practice to help prevent any illness. We encourage that you discuss with the therapist your child’s medical needs and the fact that you may need to call them at the drop of a hat for an emergency to cancel. Many therapists do have cancellation policies and you will want them to understand that while you are respectful of their policies that it is possible that your child can get sick and within an hour need to be in an emergency room. We value our therapist’s time greatly, however, sometimes this is unavoidable in the case of a transplant child on heavy immunosuppressants. Most therapists are compassionate and happy to comply.
All in all, if your child qualifies for EI, it is better to get started as soon as possible. It has been shown the sooner children get started with services, the better the outcome.
-Written by Stacy Hillenburg (parent of transplant recipient and Early Intervention Specialist)