Allison’s journey through CF is not what you would consider to be “typical”. She is not g-tube fed solely because she has Cystic Fibrosis; she is g-tube fed simply because she never learned how to eat orally. Because of all of the trauma she suffered in her first four months of life in the NICU (a time where she would normally be developing along with her peers), she was never given the opportunity to act upon her natural instincts (like suck, swallow, breathe). Instead of associating pleasant things with her mouth, she was constantly dealing with tubes going down her throat and began to disassociate her mouth with eating (a pleasure). She lost the natural instinct and desire to learn to eat and given her medical problems while in the NICU, it was no wonder. I’m not sure that we could have ever done anything differently to prevent that from happening; because she needed to have a surgery called a Nissen (to prevent reflux), the g-tube came with it automatically (it is necessary to allow air escape from the stomach ~ “venting”).
The first few months at home centered around learning Allison’s care and trying to manage daily life. We made sporadic attempts to feed her orally, but was met with extreme resistance. In an already difficult situation, it was hard to continue to push her. We started seeing an occupational therapist to work on some feeding issues. After about four months, she advised I seek a second opinion. I never went back; after all, if she knew she couldn’t do it, then why would I go back? I began looking all over the Internet for some help. What I found was that there are different feeding programs across the country that specialize in children who have feeding issues ~ ranging from minor to severe. We eventually found ourselves flying out to Baltimore to check out Kennedy Krieger; they agreed to admit her on an inpatient basis. I was not okay with that idea. First of all, we would have to share a small hospital room with another family. (Sharing hospital rooms should be a “no-no” for any CF patients.) Second of all, it didn’t seem like a good fit for us. We were placed on their six to nine month waiting list and went home with a list of tests they wanted run before she was entered into their program. Her doctors did not agree with the tests and that was pretty much the end of that dream. We also did a videoconference with Richmond; they saw Allison throw up during the session and declined to accept her into the program. We gave it some more time and then pursued more feeding therapy locally at a rehabilitation hospital ~ Mary FreeBed. We started going three times per week and about the second week, she picked up some stomach virus that landed her in the hospital. This is the summer where we were in and out for six months and she eventually had surgery to remove the adhesions (see Allison’s Story). We restarted feeding therapy at Mary FreeBed in the summer of ’06 and she learned how to close her mouth properly to take a bite. It was a huge step. Allison is currently taking her enzymes in applesauce orally with some other purees, but we have a long way to go. We are unsure what our next step will be…
The moral of the story: be persistent and diligent with finding the right feeding situation that works for you and your family. Some places offer the ability to have people come into your home; in other areas, you need to travel great distances to find the help you need. Seek out online resources and support groups that are a wealth of information. No one way is right for every child and the needs of the family are very important. Choose a program that will work for you, has the same goals you do, and that is something you can stick with when at home. I wish you the best of luck if you are facing this journey.