A word from a NPIHC Steering Committee Member
by Deb Discenza, Author, Publisher and Advocate
I am writing this piece as World Prematurity Day takes place and parents and professionals the world over honor babies born too soon. And yet as I moderate the 13,000+ member Preemie Support forum on www.Inspire.com parents are still squarely focused on their children and their specific needs because they do not require a specific day or month to remind them of prematurity.
They are aware every single day from the second their baby is born in labor and delivery and whisked away to the NICU to the roller-coaster hospitalization to the anxiety-ridden discharge day and then beyond. The Preemie Support forum shows a true slice of what is squarely on parents minds throughout the preemie journey.
For the parents in the NICU, we currently have a strong concern about a variety of medical issues from parents worried about the effects of steroids used in an attempt in getting a baby off a ventilator to a variety of birth defects being diagnosed to parents fervently attempting to figure out if the baby is ready to discharge and go home. There is a consistent surge of talk about issues with working with doctors and nurses and how to navigate every hurdle of surgery, infection, feeding issues and more. And there is a clear undercurrent of frustration at the medical teams that predict dire circumstances only to be proven wrong at every turn. As a person that supports families every day, this constant revolving door of professional doom and gloom makes me want to issue a memo to every single NICU professional and remind them that hope is still a word in the English language and that it could still be useful even in the most extreme of circumstances.
For the parents who have been lucky enough to bring their baby home, they are often surprised to find that the roller-coaster associated with the NICU has not ended but has extended into the rest of their lives with isolation from loved ones interspersed with weekly appointments with doctors, specialists, developmental therapists and medical equipment vendors. This is most obvious when RSV season is in full swing and families are on lockdown, quizzing their closest family and friends on their hand-washing capability, their personal health and habits and more. The Inspire Preemie Support forum has no lack of rage when it comes to this topic and it is at its worst as RSV is about to begin and parents are fighting insurance companies to get their child access to Synagis. Stressed, looking for answers and understanding, they look for support online and find our forum. Time and again I hear how grateful they are for our community because wherever they are in the world they cross the cultural and language barriers to connect with one another at any hour of the day and night.
For the parents of preemies who are now in the toddler/school age time frame, life still has its challenges with follow-up surgeries for items such as hernia repair and shunt revisions, hospitalizations for ongoing lung-related matters and developmental concerns. It leaves the parents with a distinct disquiet as they are enveloped with the reality of the long-term cost of prematurity lifelong physical and/or developmental disabilities. Sprinkled among them are the parents whose child is currently doing really well but they are waiting for the other proverbial shoe to drop. The forum is supportive and understanding as its members swaps stories, tips and suggestions to help the child and the parent cope with these complications and concerns.
I come away from each month on this forum with great pride and affection for the members for not only their love and devotion during such an upheaval in their lives but also their quest for support and knowledge as well as their resilience. As the mother of a 30-weeker, I know all too well that this preemie journey is not for the faint of heart. It takes a strong person to weather this personal and often lifelong storm. So in the spirit of awareness, I am truly in awe of my fellow preemie parents for their overcoming so many obstacles to give their child the best chance at a good life.