Saturday, May 23, 2009

Another Baby After Having a Child with Down Syndrome?

Like other parents who have a biological (as opposed to adopted) child with Down syndrome, Bill and I met with a genetic counselor during our week-long stay at the hospital after Matthew was born. Bill says he vividly remembers how our meeting went. I can only remember parts.

I remember the depression, the overwhelming emotional pain.

I remember seeing the results of the chromosome analysis that was done using a blood sample from Matthew. There it was - an extra copy of the 21st chromosome.

I remember asking how this happened and being "reassured" it was nothing we did to cause it and nothing we could've done to prevent it. Matthew has Trisomy 21, the most common form of chromosomal abnormality that affects approximately 1 in every 800 newborns and is typically not inherited.

I remember saying that I was only 29 and didn't think our chances of having a baby with DS was high. Matthew was our first child. We learned that we had a 1/1100 risk. I was upset that I was THE 1 out of 1100. The risk is less (1/1400) for someone between 20-24 years old and it steadily increases with age. The frequency of Down syndrome per maternal age is charted on ds-health.com. I scoffed at other similar statistics that were brought up in later conversations.

I remember asking what the chances were of a recurrence. It increased to 1% (1/100) since we've had a baby with DS. Plus, this risk increases with every year that goes by.

I remember talking about the possibilities of genetic testing for Bill and I before we have any more kids. At the time though, I really didn't feel like having any more kids because the risk of having another child with DS was so high. We talked about exploring in vitro fertilization as an option for future kids. Expensive, but if we had to, we'd find a way.

I remember thinking 'Why me?'

It took me many months to even fathom the idea of having a second child that would not be through in vitro. Many people asked when we would have another baby, not knowing that it hurt to answer "not any time soon". It felt like being pushed off a cliff and asked if I wanted to be pushed off again. I feared the possibility of having another baby with Down syndrome. I just couldn't bear to think of the developmental delays, the arm-long list of potential and likely health problems, the likelihood that he may not be able to live independently, the social stigma, and all the possible hardships that Matthew may have in his life. It broke my heart. Were there other mothers that had this same fear? Probably.

In the past few months, however, I've managed to dispel my doubts and fears. Through Matthew, I've discovered amazing unconditional love that I cannot truly express in words. Through books like Common Threads: Celebrating Life with Down Syndrome by Cynthia S. Kidder and Brian G Skotko, I found reassurances for the future. I read about individuals with Down syndrome like Karen Gaffney, who is a self-advocate, accomplished swimmer and President of the Karen Gaffney Foundation, and Chris Burke, who acted in the tv series Life Goes On from 1989 to 1993. Life is better these days for individuals with Down syndrome and I imagine it will only get better in the future. Through the internet, I found other moms who answered the nagging question I had in my mind: "Anyone here given birth to another child after having your baby with DS?" on healthboards.com.

I no longer fear possibly bearing another child with Down syndrome, not to be confused with choosing to have a child with Down syndrome. If God let me choose whether I want to have another child with Down syndrome or a 'typically developing child', I would choose the latter. Can you blame me for wanting to know first-hand what the grass is like on the other side? But the choice is not mine to make. I admire those who choose to adopt a child with DS. I feel it's just not a path for me. Would I take a prenatal screening test? Maybe, depending on how the pregnancy goes and if my doctor recommends it. But I won't be heart-broken if I find out that our second child may have Down syndrome. I'll simply be more prepared.

So, ask me again if we would have another baby. My answer, "Maybe (hopefully) some time soon. We'll see." Are there other mothers who have other (biological) kids without Down syndrome after the one with? Definitely. And I would love to meet them.

Side note: No, I am not pregnant. If I were, I'll have Matthew wear a shirt that says 'I'm the big brother' on it.

11 comments:

Jasmine said...

Ria, you are so wonderful. Thank you for being so honest. I have the same fears. I want a baby so much sometimes but the nagging fear. I know of a woman - maybe you do too. They are on my blog list. Blueberry eyes and All 4 gals. They went on to have more children that did not have down syndrome.

I loved this post - it was sincere and transparent - all you. Thank you.

Anonymous said...

Ria- what an incredible post. I am reminded of what an inspiration you are to me- full of courage, hard work, kindness and humor, all the characteristics of a great mother. You know how much our family loves Matthew- I can't imagine life without him. He brings so much to our family- our world is bigger with him in it. With you & Bill behind him, Matthew's future is full of possibilities. I can understand wanting to see "the other side of the grass" though.. just be forewarned it's not nearly as green as it appears from a distance! :) When you are ready, we are of course eager to welcome more little ones, Down syndrome, "typical",or otherwise. That's the great thing about love- there's always more to go around.
I'm lucky to have you as friend, and I'm lucky to have Matthew as a nephew.

In terms of you asking about kids after a child with DS, I have a very good friend whose parents were quite surprised when their second child had Down syndrome. Their first child did not. They went on to have more chidren though, and the third child and fourth child did not have DS either. In fact, the first became a nun and then later married and got a master's degree in education, the third (my friend) became a doctor, and the fourth has a masters in biology... all not only "typical", but well above "average" by the way the world tends to judge such things. But they will all say that their sister with DS gave them the REAL education, in patience, kindness, acceptance, and courage. This anecdote obviously doesn't guarantee anything for you and Bill in any direction... but it shows how things played out for another family.
Love always,
your sis-in-law, Kris

ds.mama said...

Ria,
I have a friend who had a baby with ds whose doctor told her that the chances of her having another would be like getting struck by lightening (guess he hadn't seen the real odds!) Anyway, she went on to have two more perfectly typical children. And, so far I haven't come across anyone who had multiple biological children with ds.

Anyway, as you already know, there are no guarantees in life, but follow your heart. I wish I could reach out across this internet and give you a hug right now. :-)

Chelle said...

Thank you for sharing your story. I love you both, and you are very strong. I can't imagine how tough those first days/weeks/months were, but Brad and I have been continually amazed to see how much you both work with Matthew and help him develop, and how much love you give him!

Kim Ayres said...

Meg was our last child anyway - we had one of our own, plus 3 from my wife's previous marriage already, so never considered the idea of any more. But I do know others who have. There's another blogger couple I know have 5 kids, and it's the 3rd who has DS.

But the real thing that happens when our child is born with DS is first of all the DS looms larger than anything else. But as time goes past, we come to realise it's only one part of our child. And the longer time goes on, the smaller and less important that part happens to be. Yes Meg has DS, but it's only a small part of who she is, and definitely not the DEFINING part of who she is.

And so it is with Matthew. Now the DS is no longer a huge fear. You can see it for what it is- a characteristic, not a definition.

As you say, perhaps having a child with DS wouldn't be your first choice, but it certainly no longer becomes such an issue.

I think the fact you could write about this is a really positive indication of how far you have come :)

Ria said...

Thanks everyone. :-)
Ds Mama, internet hug received. :-)
Kim, I totally agree with you (and like the way you said it) that DS is a characteristic, not something that defines a person.

Michelle said...

Hi Ria
I could identify with a lot of your thoughts and emotions on this post. After Kayla was born I remember numerous comments about having a 2nd child etc and while I grinned on the outside, inside I was thinking 'don't talk to me about having another child right now!' LOL Initially my thought process was being a little leery of trying again - the 'what if' it DOES happen again. I also was told the 1 in 100 statistic, but the way the perinatologist talked about it it sounded like it was almost an arbitrary number the medical community had to come up with. I don't remember her explanation.

Obviously I eventually got over my hesitations about trying again. I had always wanted 2 kids and I wanted Kayla to grow up with a sibling. I figured if it DID happen again, at least now we would know what we were dealing with and it wouldn't be so scary and unknown.

Beth said...

Hi Ria!
I'm glad you found my blog, so I could find yours! I'm just back from a weekend away, but wanted to stop in quickly to say hello!

I do know many many families that have had more children after having a child with Ds. Some had their child with Ds first, and others have their bonus chromosome kid somewhere in the middle. I literally have made contact with thousands of families that have a child with Ds, and I know of only 3 that have had more than one child with Down syndrome. I do know one woman who didn't know she had Mosaic Ds until she had a second child with Ds. And the third, and then they adopted a baby with Ds as well! I know of many many families that have twins, with one having Ds and the other is typically developing.

I know that you already "played the odds" and won the prize of discovering the world of Down syndrome, but really, I would not at all expect your subsequent children to have Down syndrome. I don't think those 1/100 odds are accurate from the families I know. I think the odds are pretty much the same as they would be for any other parent your age. One thing you might want to think about before trying for your next family member is to have your homocysteine level checked and to be sure you're taking plenty of folic acid. These two things have been correlated to "sticky" chromosomes.

More later on this--but glad to meet you!

Lori said...

Hi Ria -
What a lovely and honest post. I believe, that no matter what, God is in control and He will not give us anything that He has not equipped us (or will equip us) to handle. It is the only belief that keeps me hanging on some days.

Though Anna is our third child, and likely our last (though I have not completely ruled out another) I can totally relate to your fears. My husband would love to have another child (a boy preferrably- ha!), but I am more than a little gun-shy, and I am 5 years older than you. Right now, my argument for not having another child (besides finally getting my body back after being pg or nursing for the past 6 years) is that there is no way I can carry Anna if she is not walking while I am pg, or with a newborn in my arms. (I am so practical - ha ha!) But really - it is the fear. But, then I go back to what I believe -- God is Good and He is in control - so what, really, do I have to fear?

Praying that if you do decide to have additional children that all is well and healthy - Ds or not!

Oh, and I know a woman whose first son has Ds and then she went on to have 4 other typical boys...the last of which was born when she was 39.

Ann said...

My fifth child, diagnosed with down syndrome at birth, was born after I reached the "mature" age of forty. She has completed our family in more ways than I could have imagined. I wonder if that she was my first, would I have pushed the envelope four more times. Now that I have earned my years and have been gifted many life lessons , I would have to say YES. All of my children are unique and "special", my daughter is in the mix. An individual... treasured and adored, disciplined and perfect!!!

RK said...

I'm late to this post, I know, but I thought I'd throw in 2 cents from my perspective. Braska was my first, I was 32, and we hadn't planned to have ANY kids. But when she was born, and I was in shock for a few days, I'm surprised now to look back and realize that I never feared another child, even then. In fact, I remember thinking, "Well, this means we need to have another one quick." Probably because I know that kids with DS who have siblings around as peer models 24/7 do so much better in many situations...and it makes sense. I was alone in my thoughts, though, as my husband did not want any more. Fast forward 27 months from Braska's birth, and Kinlee arrived, only 46 chromosomes on board. She's wonderful and a pretty easy baby as typical kids go, but I think there was a part of us that was scared all over again. This was new territory and we had it all to learn from scratch.

Bottom line: I wouldn't fear it. Easy for me to say. But if you want another baby, go for it! It's priceless to see Braska love all over Kinlee, to see them giggling together already. Can't beat it!