Why We Started Preemie Child
Our Personal JourneyThe Beginning - by Rick Martin
I was just getting settled into my meeting at work when the phone rang. I hesitated to answer it because lately the calls tended to bring bad news.
Several months previous my wife had been unexpectedly hospitalized in the 24th week of her pregnancy. For the next ten days a desperate struggle ensued to keep the baby inside without doing long-term damage to my wife. While her systems couldn’t really handle the strain, we knew that the longer the baby was inside the better the chance for survival. Finally, the time arrived when her body could take it no longer. We traveled down to the delivery room not knowing what was to come.
Two ‘surgical’ set ups awaited us in delivery—one for the birth and the other to receive this terribly unprepared fetus that had leave the womb. I saw the baby rushed out of the room. The head of Fairfax Hospital’s renowned neonatal intensive care unit came over to say simply that the baby was "very, very small." I thought this was the explanation why the child had not made it. The only comfort was that my wife would be okay.
Back in a private room our priest, who happened to be the wife of our obstetrician, was waiting for me. We spent a tearful period going over what had happened and why. A knock interrupted my grieving and a nurse walked in. She excused the interruption but wanted to know "Mr. Martin, have you chosen a pediatrician?"
A while later I was escorted upstairs and shown how to clean up and put on surgical scrubs. I was led into the sterile noisy environment in which my incredibly small little boy (1 pound and 2 ounces) spent the first four months of his life. A short time later the priest joined me and Alex was baptised on the spot.
Now several months later I was wary of these kind of calls. We had almost lost him on several occasions and he remained dependent on the mechanical ventilator. The voice was my wife and I could sense tension and excitement. She had a report. Alex had pulled out his ventilator tube during the wee hours of the morning and had begun to breathe on his own. He was being monitored closely but the doctor were optimistic that this time he was ready. They said if it kept up for 24 hours he would breathe for the rest of his life. I began to cry in front of my whole staff…..The Present - by Allison Martin
Twelve years later we are still experiencing the aftermath of those early months of life of our son. Alex had just about every complication a one pound baby can have, and yet through it all he held on with great tenacity.
In the Alex’s first year, we concentrated on survival, on worries about quality of life and concerns with severity of impacts. However, as he has grown he has overcome most of his many medical problems to the point where they are but one factor in our day to day affairs. We are past emergencies and into long term treatment. Nebulizers and visits to the eye doctor and the neurologist were a given part of our life for much of Alex's life, just as much part of our routine as brushing the teeth are for other families. While the large scars on his body are remarkable, the invisible impacts of his early birth are much more pervasive. Each developmental stage along the way seems to bring new worries and problems, along with accomplishments and joy. (See more about Alex.)
Many children who are born prematurely will grow up with only very minor impacts related to their early arrival. However, some children born prematurely will have life-long special needs. The second group in particular, no matter how severe or mild the impacts, can benefit from contact with other parents who are dealing with many of the same issues.
The small numbers of these children (while growing each year) causes parents to become isolated as they leave the cushion of the hospital NICU and Early Intervention of their children’s younger years. The accommodation of these kids into school and society can be tough. Getting good information and finding good doctors and therapists, communicating with the school system and their teams of experts, and finding friends with other families are major tasks for these families.
One of the most difficult issues we dealt with was the isolation of our family. We have become skilled advocators for our son, jugglers of a multitude of appointments, knowledgeable in a number of medical and other disciplines, and skilled at modifying activities to be inclusive. Over time we have found that just a few moments of sharing with other parents who are dealing with some of the similar issues, helps to left the burden of isolation so we can share a few chuckles, our frustration and some information and focus on our task with renewed vigor.Support on the Internet
In our quest for information and support in regards to our own son, now long past the baby and toddler stage, we investigated many other Internet resources. In my volunteer work on the Committee for the PREEMIE-L mailing list for parents of young preemies, I am reminded of the genesis of my son’s current difficulties. And, I realize how blessed we are and how far we have come.
We found listservs to be wonderful resources, interesting and supportive, however very few seem to address our specific needs. As a family with an older preemie - we don’t fit in with many of the special support groups. We have learned so much from parents and specialists, but our son's special needs are too various and unique to be served exclusively by any one of these groups. We have to juggle our disabilities and our priorities. We needed a place to support us in caring for the whole child that is our son.
In 1998, we started a new listserv: PREEMIE-CHILD. Parents of older children born premature are discovering common ground on the Preemie Child listserv as we share our stories and experiences. We share scientific research, therapies, support and experiences to further understand our own situation and in turn to help one another. Our website PREMATURE BABY - PREMATURE CHILD is the repository for some of the information we have gathered along the way. Ths unique website provides vital information to families of older children who still have issues related to prematurity. Our website and list are the primary online resources for direct support to families of older preemies.
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