Thursday, January 8, 2009

sadness

This month marks the beginning of my seventh year of teaching natural childbirth classes.
I can't believe all the wonderful families I've been able to work with; each couple has taught me something new about pregnancy, birth and relationships.

I've been fortunate to have taught for this long without any major incidents with my students-- like injury and death.

I have a new series beginning on Monday. It was scheduled to begin January 26th, so I called my registered students to see if they would be down with beginning on the 12th instead. One mom I talked to received some unexpected news in late December right before the holidays: her baby is not developing as expected, and the prediction is that the baby has Down syndrome. I didn't know what to say. She had to wait until this week to find out more information because, of course, many people take time off for the holidays. She told me, "I'm sorry if I start crying." Oh. I feel awful that she felt the need to say that.

She said that she and her husband are fine with the baby having Down syndrome, it's the unknown that is scary...and the fact that everything that she thought was normal and predictable is now unknown and unpredictable. I am so sad for her--not because of anything that may be "wrong" with her baby-- because being pregnant, giving birth and having a baby can be such a fearful time for women and to top it off with the unknown and the waiting to know....it's just so hard.

I imagine that she will choose to not take my class. The baby will be taken from her immediately after his birth. There will be no immediate skin to skin or putting the baby to breast. She can still have a natural birth, though, unless something else arises that I am unaware of at this time. I try to imagine what it would be like for me to take a birthing class with women who are having perfectly healthy babies knowing that I am having a child with multiple health issues. I think it would be painful, but I also think that the experience can be positive for her and for those in class with her. Her experience can really touch others in ways that she may be unable to imagine right now and may really lift her spirits.

I feel for her, and I wish there was something I could do for her.

2 comments:

rickismom said...

I am also a childbirth teacher (part time), but my first experience with "unexpected outcomes" was my own daughters birth with Down syndrome. (At the time of the birth When I asked "Is the baby OK?", and I received no answer, even after three tries, my first thought was "Uh-oh, I think I've heard this story before and I don't like the ending...."(I even wrote an article for the ICEA professional publication years back.)(Today my daughter Ricki is 14 years old.) Today I teach less; I am too busy....
While it will be hard for this woman to attend classes, I would urge you not to rule it out. She needs parts of her life to stay "normal", and she may decide to put up with the stupid things people say just to have something still "normal" In any case, she should have some access to a course (private if necessary.)
If the baby does not have a heart condition, there may still be a possibility of bonding time after the birth. (I had some bonding time, but then Ricki turned blue-from PDA which of course was not seen on any tests, as it only appears at birth with failure of the ductus to close. Nursing ended VERY abruptly. )I have several friends who had good experiences with bonding time with their babies with DS after the birth.

You can refer her to my blog. It is an honest yet upbeat look at life with a teen with Down syndrome.
http://beneaththewings.blogspot.com/

Momma Kat said...

I would encourage the family to contact the National Down Syndrome Congress (www.ndsccenter.org). The NDSC can put them in touch with a local organization and families that have been through the same trying times.

I am mom to a 3 year-old girl with Down syndrome. While she did not have any major medical issues at birth, we belong to a local playgroup for families of kids with Down syndrome. Many of her young friends have had cardiac or gastro surgeries. They have all recovered well and are developing as well as their peers!

I'd also recommend becoming familiar with People First Language. There is info on the web at www.disabilityisnatural.com/peoplefirstlanguage.htm. We never referred to our daughter as a "Down's baby", for example. We found that people took their lead from our language.

Most importantly, try not to go overboard expressing condolences to the family. There is a new life being brought into the world and this is an occassion for joy. While it's okay to say "I'm sorry that you're having to deal with these challenges", please don't say "I'm sorry your baby has Down syndrome".

Down syndrome is not a terminal illness and children born today with Down syndrome are able to live independently and make meaningful contributions to the world!

Encourage the family to connect with the local Down syndrome community and to prepare to celebrate the birth of their bundle of joy!!