I was a good student – honors, straight As, teacher’s pet, whatever. But not in the subjects I didn’t like, particularly the sciences. I just didn’t see the point and it wasn’t creative or artsy enough for me, so I barely passed in those subjects, or I failed altogether. Now I wish I had paid better attention and learned more.
Today, for a split second, I really wished I’d paid more attention in school.
A little background to this story first. My youngest daughter (at age 28) is pregnant. This was a completely unplanned pregnancy for her and her life situation isn’t what one would call ideal – she’s single, unable to work, lives at home with me, and has a lot of her own health issues. This is also a young woman who nearly had to have a hysterectomy at around 24, so we really never thought a baby was going to happen for her. So, for her to be pregnant now comes as both a blessing and a concern. To top things off, she was on a lot of medications, including narcotic pain killers, before she learned she was pregnant, so her baby and pregnancy is considered high risk.
She’s lucky however because she has her older sister and me to be by her side throughout all of this, and her sister lives only 20 minutes from us. After her first visit with the baby doctor, she was referred to a genetics counselor and a perinatologist to determine the effects of her medications on the fetus. She was told what medications she absolutely had to discontinue (which she did) and the rest were determined not to cause any birth defects to the baby. All the ultrasounds and tests came out fine and baby was growing normally. We were feeling confident and hopeful.
Until Tuesday. Tuesday, my daughter got the results from the full genetic screening and was told that she was high risk for having a Down Syndrome baby – odds of 1:74. Normal odds are 1:1,000. We were crushed. We didn’t expect this and we really didn’t know what it meant. We had to wait 24 hours before we could get in to speak in person with the doctors and genetic counselor to learn more. Meanwhile, my way of coping was to search and glean as much education as I could about the subject.
Yesterday in the genetic counselor’s office, she asks the three of us (my daughters and me), “You know what chromosomes look like, right?” They both instantly nod yes, I nodded no. Seriously. I didn’t immediately know and if you’d asked me how many chromosomes there are in the body that make up whatever, I couldn’t tell you. I wouldn’t have been able to explain how there’s one from mommy, one from daddy in each pair.
Well, it didn’t matter anyway because she went on to explain to us how this worked. Essentially, what they needed to look for with my daughter is if there is a third marker (is that the right term?) in the 21st chromosome. If yes, baby has Down Syndrome, without a doubt. If no, baby is normal. Also, in the final chromosome, they’d be able to identify if baby is a boy or girl. (Woohooo!)
However, before she had this test, we learned more about what caused her risk for Down Syndrome to go so high. Her HCG hormone was very high and another one was lower than they expected to see. They think it’s very possible that some of this is from her “wonky” placenta, which will be watched closely throughout this pregnancy. But they couldn’t be sure, so therefore it raised her risk higher. On top of all this we learned that regardless of Down Syndrome or not, the baby is high risk and will definitely be spending time in the NICU after delivery because of the medications my daughter is on. The only question is for how long.
All this talk about hormones, placentas, chromosomes and such made me realize that really I should have paid better attention – if they even taught this stuff in school. When I was having babies they didn’t look at any of this stuff with me. I’m so grateful I had healthy babies. I’m peeking in to the world of what it is like for parents (and extended families) who have babies with complications of any sort. It is all so scary, stressful, educational, and eye-opening. I have realized just how blessed my family has been so far to have healthy babies, no catastrophic life issues really at all, and how much I’ve taken for granted. I’m peeking in to the world of special needs babies, and although my heart has gone out (sincerely) to parents who live in this world, it is an area I had hoped I’d never have to experience personally. But the bottom line is that I know this baby is a gift to our family. We will be blessed to have this child join our lives and we will all be stronger for it one way or another. I am also of the very firm belief that God never gives us more than we can handle.
I hope to be able to blog about this as we go through the journey because my daughter’s story (and mine, as it relates to my daughter) is about life and dealing with life on life’s terms – and this blog is all about life, the rhythm of life, its ups and downs, trials and tribulations, joys and sorrows.
Thanks for listening.
{ 11 comments }
(((((hugs)))))
Thanks, Teri. Much needed and much appreciated.
Dear Claire,
Praying for you and your girls for a good outcome…
Thank you, Mary. We’ll take all the prayers we can get.
Hi! I have a sin 19 months old with Down syndrome. He was in the NICU for only 2 days. He is doing wonderfully and is the light of our lives. I found Downsyn.com to be absolutely wonderful, they have a forum of parents that are AMAZING! Good luck to you and your daughter.
Joanne, hello! Thank you for commenting and I hope you keep coming back. We will get the test results today (Friday) and know for sure. We know that even if the baby has Down syndrome, he or she will be a delight for us as your son is for you. There is no doubt. I bet even 2 days in the NICU for your son was hard for you, yes? Glad it was only 2 days. Thank you for your wishes.
That would be SON not SIN…oops
For both my pregnancies, I tested high for AFP (Alpha Feotal Protein), at ages 29 and 39, respectively; a high reading can indicate birth defects.
Older Son was born a few days after his due date, perfectly healthy.
Because I was 10 years older for the second (and unexpected) pregnancy, the doctor (essentially) panicked, called me to tell me the reading was “too high” and basically told me I would be having a child with Down’s or other birth defects, and he was sending me to see a specialist 45 minutes away for amnio, here’s the appointment, bye (he didn’t continue as my doctor!).
The specialist’s office was very patient and good about explaining that even with my age and the high number on the test result, I still had a better than *98% * chance for a healthy baby (doesn’t look as bad when the numbers are looked at from a different perspective!). A higher level ultrasound didn’t indicate any problems (the doctor looked for specific physical markers), and so I chose to forego additional testing.
Younger Son was born almost a week past his due date, healthy and normal.
I’m wishing you both – three! – the best of luck over the coming months – peace and blessings and joy as you travel on this journey!
{{{hugs}}}
Jean Marie – welcome to my little corner of the blogosphere and thank you for sharing your experiences with us. I mean that sincerely. I did a lot of research and one thing we asked the genetics counselor was about the incidence of false positives – we were finding a lot of reports of that on the web. The good news was that the ultrasound measurements showed the baby to be fine – it was the hormorne readings – particularly the elevated HCG that caused her risk to be higher. However, like your * good * doctors did, she presented it from a different perspective – that my grandchild has a 75% chance of being perfectly normal, and 25% of having Downs. I think – if I listen to my gut – that the readings are askew because of her placenta issues, which could be causing the elevated HCG.
Either way, today is the day and we will know for sure. I’ll post an update as soon as I hear.
I’m so happy that both your babies were born healthy. I have always had super easy pregancies myself, as did my oldest daughter, and easy pregnancies run in our family – never any complications – so this came as a huge surprise to us.
Again, however it turns out, I will have a new grandbaby, and that’s always exciting.
Hi Claire – The blood work can spook a lot of people because hormone levels can be “off” for a number of reasons. The only way to tell for sure if there is DS is through amnio (or through CVS, another procedure). I’m glad to hear that the ultrasound went well and all looks good. Hope all goes smoothly. Feel free to send us questions in the future if you have them: AskUs@marchofdimes.com.
Hi MoDLin – She ended up having the CVS and that’s how we found out that baby is fine, and that it’s a girl.
Her hormone levels were off, like you said. We’re hoping all will go smoothly from here on out. Thank you so much for your info and commenting. It is sincerely appreciated.
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