Gem was born in April 2000. The only time she was unsettled was at night when she would only settle lying on her stomach on top of me. She didn't spill much milk but we could occasionally hear her gulping after a feed. At two weeks of age she started a high pitched scream after feeds and would only settle upright in our arms. Due to another health condition she had, she was quickly diagnosed with gastric reflux and put on medication for this, but her pain continued to get worse, and she would cry and arch her back for up to an hour at a time. A pacifier became a survival tool, that I had absolutely not even considered with our first two children. I don’t like them but with a reflux baby they can help with the pain and I needed my sleep. Fortunately she was settled at night – eventually – but things continued the same during the day. She would often choke on her feed and started being unable to finish a feed due to pain. We would stop and start a feed several times and with persistance she continued to have a good weight gain. It took until 8 months of age to control her pain adequately.
Today she is three-and-a-half years old, and still requires medication for her reflux, but is a bright otherwise healthy child. Things can still be tough at times, but different to when she was a baby. We are lucky to have a supportive paediatrician and friends that understand her condition. When Gem was around 6 months we had contact with Gastric Reflux Associaton for the Support of Parents/babies (GRASP) who provided wonderful telephone advice and support, and printed information on a variety of topics. Without this support life would have been a lot more stressful. This Association stopped operating in 2001, and I am now involved in the Gastric Reflux Support Network NZ (GRSNNZ) that is continuing this work throughout New Zealand. It is great to be able to give back some of that support we received, and I in return are supported by other parents.
The internet has made support for any condition/disability a lot easier to access. It is amazing what we feel comfortable writing about, but caution is required with what we take on board. It frightens me that some one (especially a child) could get hurt by forceful medication advice, incorrect diagnosis and negative/angry comments/suggestions about the medical system by someone who is not qualified. GRSNNZ support people but do not put personal opinions onto parents or give advice on which medications should be used. We are here to support parents, and provide tips and information to get the most out of your baby's treatment. If you are looking for information/support on a particular condition make sure you are dealing with a site that has your child's best interest at heart by looking for associations with other reputable health sites or registered support groups, codes of conduct, or check with your health professional.