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Thursday, November 22, 2007

What do you say?

I hope everyone in the US had a fabulous Thanksgiving holiday! Our family joined my parents, my brother and his girlfriend and my father's mother at my parents home and we ate A LOT of really great food. Arianna had green beans but the handful and some of my dads world famous stuffing - finishing up with a big bowl of ice cream (a daily special). She has done pretty well eating again after getting over her cold - I'm pleased. We just need to get some weight back on her and get rid of that pesky 'see her ribs' look.

Our more relaxing day started with a sad phone call from my mother. My cousin who was 16 weeks pregnant lost her baby yesterday. She works as an ultrasound technician (actually both of her parents and one of her sisters are also US technicians) and has been giving herself regular ultrasounds and noticed something odd on Monday. She had her sister give her another US and they noticed something was definitely not right (I think my mom said my other cousin cried the whole day).

Turns out, according to my cousins OB, that her baby had the worst case of spina bifida he had ever seen. She gave birth, yesterday, at 16 weeks, 4 days.

My cousin was pregnant with her first at the same time I was, actually a few weeks ahead. She was going to have the first child from our generation. Then I went early and had Arianna first, her little girl Samantha was born just 3 weeks later (and a week over due). We have lots of pictures of Samantha and Ari together, which are priceless. They're very spoiled great/grand kids! (of course, Samantha was walking at 9 months, talking in full sentences at 18 months and always near the top in terms of weight/height and my Nana always has to point out how Ari just doesn't match up to her).

I found out she was pregnant again a few months ago and was really jealous as I had baby-itis so bad (and still do). I make greeting cards (even sell them at a local store) and sent one to her as soon as I heard the news - I was happy for her even though I was sad for myself.

I'm not jealous now. I'd hate being in their position, grieving for their child.

What I find interesting is that SB can be genetic, and I never knew. I thought you just had to take folic acid and everything would be ok and that SB happened to people who didn't take folic acid. When I was first diagnosed with Long QT Syndrome I was battling a misdiagnosis of epilepsy and saw a prominant female neurologist who dealt only with female epilepsy patients and as I was exclusively dating (my now husband) at the time she DEMANDED I take folic acid supplements even though I wasn't trying to get pregnant - so it was sort of drilled into me that folic acid is the end all/be all prevention to SB.

What I found to be even more interesting is that SB has an alarming high rate of incidence in the Irish population. Woah. I'm very Irish, my cousin is very irish and married a man who is equally very irish (We're from Boston, its hard to escape Irish here... the flack I got when I married an Italian? More intense than most...). My mother's grandparents came in off the boat. My father's grandparents came off the boat in Canada and migrated down here during his parents generation (and his parents are 3rd cousins!).

I never knew of this genetic link. My husband and I are trying to conceive and I'm taking a daily multivitamin that has 400 mcg of folic acid - which my OB said was fine. Do you think I should ask her if I should increase that now that I have a close family member who had a baby with a severe case of SB? The research I've been reading lists a bunch of risk factors that don't apply to me except that I now have a family member with a history.

What was also very interesting was the response from various family members. My family is very 'Boston Roman Catholic' (everyone, including myself, went to catholic school at one point) - which, I believe, is its own form of catholicism. Rules just seem to be bent, broken, construed here more so than other places in the US (which is why I have no ties to them anymore). My father and grandmother joked about it today actually: "When you ask someone if they're from Dorchester you don't say 'what street did you live on?', its 'what parish did you belong to - St. Mark's, St. Gregory's, St. Peter's?' ".

When my dad's sister called to tell him the news this morning she told him the baby had died in utero. My grandmother said she 'had the baby naturally' and the surprising 'it's a blessing in disguise'. My father said she had an abortion and expressed very strong views on the subject (which surprised me, actually).

Either way, its very sad for my cousin and her family.

After hearing family reaction I think I'll keep my resuscitation views to myself though.

More importantly - what do you say? I'm sitting her trying to come up with an idea for a card, but I haven't a clue what to put in it.

1 comment:

Laura said...

what anyone who has lost someone they loved:
I am so very sorry.
and if you are close by, you reach out and hug her, long and with feeling.
i lost twins at 20 weeks more than 17 years ago and i remember how isolated i felt because folks just didn't know what to say or do. all i wanted was to hear a verbal expression of sympathy and for someone to hug me rather than avoid eye contact, physical contact and mumble a weak expression of sympathy.
i don't know her but i am so sorry for your cousin's loss, and the family's.
take care.