Wrapping up “Julianna week” here at So Much to Say, So Little Time. This week, I participated in a research study. The researchers are asking people about their experiences at and around the time they received a diagnosis of a “congenital condition,” such as Down syndrome. I decided to share some of my answers today as my 7 Quick Takes post. As you will see, we had lots of frustration. So before I get started, I want to say that my Ob/Gyn, who gave us the diagnosis, ROCKS, and so does the lactation consulting staff at the hospital where we delivered. I wrote these responses quickly, and I’m choosing not to edit, so please bear with the less-than-stellar prose today.
How long was it from the time you or your healthcare professional had concerns until a diagnosis was made?
They told us about 2 hours after birth; we had a FISH diagnosis less than 48 hours later.
What support were you offered? If you were not offered support, did you seek it out? Where and how did you find it?
Support came primarily from our family members and acquaintances, who put us in contact with early intervention. A friend of a family member was a doctor who came in to speak with us; we also happened to be in the hospital at the same time as a couple who had a sibling with Down’s, and we were able to make contact by passing messages through the hospital staff. The hospital staff, however, didn’t know what to do with us, really.
Describe your impression of receiving the diagnosis and the time that immediately followed, such as getting support and information.
The first few days were tough. The hospital pediatrician didn’t seem to know what to do with us; he didn’t hear a heart murmur, so he didn’t want to do an echo until we were told by a DS support group person that echoes were standard procedure, and we pushed for it. When we went to see the geneticist, he threw a book of Bad News at us without emotion. I’m sure he thought he was just being professional but he scared the crap out of us about her life. I know doctors are supposed to deal in facts, not warm fuzzies, but there IS another side to life with special needs, and parents need that reassurance. The genetecist also infuriated me by watching me nurse my daughter and then telling me not to get my heart broken if she couldn’t
nurse. Then, when the report came (2 months later!), it was like they had lifted the textbook description of Down’s and plopped it into the report, including the statement that my daughter had the typical DS single crease on her palm–which, incidentally, she doesn’t. I was so offended by this, I still get mad about it.
Once we got hooked up with early intervention, things changed markedly for the better. We had great team members and also good support from our church & family.
What was most/least beneficial?
Most: Just knowing that people were all around us and offering to help. My husband found all the medical knowledge helpful; I just found it overwhelming. It also helped to talk to a parent, who could put everything in perspective and say: step 1. Step 2. Step 3. It gave us a place to start.
Least: Doctors who made assumptions about my daughter and didn’t bother making a detailed examination of her before forecasting a dismal future.
How has having a child with a congenital condition impacted your family?
We have had to arrange our schedule around hers so that she gets the services she needs. But outside of that, having a child with Down’s is a lot like having any other child. You take it one day at a time, you learn their preferences and strengths and weaknesses the same way. There are things we have to think about differently, like education and future planning, but the day to day life looks a lot like it would have if she’d been born with a normal number of chromosomes.
What is one tip or resource that you wish you knew about, or words of wisdom that you wish someone would have shared with you during this experience?
It’s all too easy to try to process the whole experience of parenting a child w/special needs all at once. You don’t need to know all the details about adulthood, life expectancy, even preschool, on Day One. A baby is a baby. They’re all helpless & can’t hold up their heads. They all learn things one day at a time; their development unfolds one day at a time–just like every other baby. It’s just slower. You have lots of time to process what may or may not happen to your child. In the early part of the process, all you need is to do is feed, clothe and cuddle them. Just like every other baby.