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Request - Please Share Your Experience and Perspective

Posted May 06 2009 1:33pm
My good friend, Jodi, is a poli-sci professor at Cal State Fullerton. Let me just say first that everyone should have a friend like her. She has been such a wonderful support to me since Finn was born, taking the time to read and learn about Ds, and always there with a compassionate ear and an encouraging word.

This morning I got this email from her:

"So, I was talking with a former student yesterday about her post-graduation plans. She's graduating from Chapman University with a Master's in Health Communication. The job market is bleak so she's looking for internships to build her resume until the economy improves.

I suggested working with the NDSS on a research project to improve communication between doctors and parents when it comes to prenatal testing and Down syndrome. She almost jumped out of her chair with excitement. It's exactly the kind of work she wants to do.

I gave her a bunch of links to get started on her research (she was as horrified as you and I about the 90% abortion stat), but I was wondering if you'd be willing to post a request on your blog about what you and other parents would have WANTED to hear from your doctor in either a prenatal or postnatal meeting. What resources do you wish you'd been handed?"

As for me, I really can't say that there is anything I would have changed about the delivery of Finn's diagnosis. As I've said before, I declined prenatal testing, so we didn't find out until after he was born, and really, we sort of found out in stages. The first inkling I had was when Finn was several hours old and I thought I saw something in his face . . . just a few minutes after that, my midwife indicated that he had some markers that might indicate Down syndrome. I think she suspected pretty soon after he was born, but she went home and did a bunch of research before bringing it up to us. In all the babies she had caught up to that point, Finn was the first with Down syndrome (and he's so far been the only of "her" babies with Ds), so I'm sure she was scared about how to deliver a possible diagnosis. She was very compassionate and did her best not to alarm us.

When Finn was diagnosed with a duodenal atresia in the ER, we were told that that was a marker for Ds, so that was another step in receiving the diagnosis. The geneticist who came to examine him and take blood for his karyotype in the NICU was very kind and warm and compassionate. It stands out in my mind that she wasn't cold or distant, she seemed to understand that news like that would be painful and hard to digest for parents, and she behaved accordingly. Even when she gave us the confirmation of his diagnosis of Ds a few days later, she was very warm and compassionate and made sure to tell us that his future could be a full and positive one.

In the NICU we were given so much paperwork about Down syndrome. Lots of pamphlets and information sheets. Most of it I didn't look at for a long, long time - months - because at the time it was just too overwhelming. Someone met with us in the NICU regarding getting services for Finn as soon as possible after he was released from the hospital in order to maximize his potential. She was very informative about the types of services available.

I honestly can't think of a single person who gave us any indication that Finn's future might be bleak. Even our pediatrician has been unendingly positive - except for the whole breastfeeding fiasco very early on, when Finn wasn't gaining well and the pedi recommended putting him on formula. Instead, I worked with a wonderful lactation nurse who helped Finn and I work out all the breastfeeding kinks and establish a good nursing relationship, and he magically started gaining well. I went back to our ped and told him that he would better serve his mothers who were motivated to breastfeed by referring them to a good LC rather than pushing formula, and he apologized to me and admitted that he had assumed that Finn would not be able to nurse well because he has Ds. He said he would never make that assumption again. Ever since then, I've felt that he and I are more of a "team" in Finn's well-being, rather than him being the authority figure because he wears a white coat (well, really he doesn't, but you get my meaning).

Anyway, so I have to say that for us, the way we found out about Finn having Ds was I think as positive as it could have been. All the professionals we had to deal with were positive and compassionate. We were given lots of information and resources. I do think that more breastfeeding info and help should be offered to moms who are receiving a prenatal or postnatal diagnosis of Ds, because I think too often the assumption is made that the baby won't be able to breastfeed and that's just not the case. And babies with Ds can benefit even more from breastfeeding than "typical" babies, so I think it's imperative that moms be given the information.

Please share your experience and what you would have liked to hear and receive when you received your child's diagnosis.

Thanks ladies!
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