Wednesday, March 21, 2007

Choices

I've already mentioned that when I was pregnant with our triplets, numerous doctors talked with us about "selective reduction". In other words, we were given the option of reducing one or more of our fetuses because some have argued that a twin pregnancy is lower risk than a triplet pregnancy - and there is a greater chance a woman can carry two fetuses longer than three, hence giving the remaining children a better shot at life.

Although Charlie and I were totally shell-shocked that I was pregnant with triplets - the thought of "reducing" one of them was unfathomable. It was absolutely something I could and would never, ever do.

But that's just me.

I know a few people that have reduced from quadruplets to triplets ... from quadruplets to twins ... from triplets to twins ... or from triplets to a singleton, for the very reason that they were concerned with the risk (for themself and their unborn babies) that would stem from a high order multiple (HOM) gestation. (It's important to note that not all of these pregnancies and resulting "reductions" were for women that became pregnant with medical assistance. Some of the HOM's were naturally conceived).

I also know a few people that have reduced from triplets to twins ... or from twins to a singleton, because the thought of more than one baby at a time to care for ... was completely overwhelming.

The fact is - there are choices available for how people choose to manage their pregnancy. And because these choices are available, this topic will remain highly controversial.

And highly personal.

I've also mentioned that while I was pregnant with our triplets, we discovered that all three of our babies had choroid plexus cysts on their brains and William, had an echogenic cardiac foci on his heart. We were told by a genetic counselor that these features were considered "soft markers" for birth defects. Namely, Trisomy 18 and Trisomy 21 (aka: Down Syndrome).

Once again, Charlie and I were shell-shocked. After all that we'd been through to get pregnant ... there was now a chance that not one, but all three of our precious babies could be born with birth defects so severe, they might not survive their first year of life.

Our only option of ruling out these birth defects was to perform an amniocentesis. But, if we did an amnio, there was a risk that we could lose one - or all - of our fetuses. And if we were willing to take that chance ... what would we do with the information, if it came back that there was a problem?

Would we terminate the pregnancy?

Thankfully, Charlie and I have been on the same page from the beginning. Although we were willing to do just about anything to get pregnant ... we were not willing to reduce one of our fetuses. Likewise, we were not willing to do anything that would in any way - put my pregnancy at risk. And if that meant that we would give birth to children with grave birth defects - that was something we would deal with, together.

So, we skipped the amnio ... we prayed fervently that our children would be born healthy ... and we tried to put our thoughts elsewhere for the remainder of my pregnancy. It wasn't easy.

Now that I'm pregnant again - so many of the fears that I had with my triplet pregnancy have resurfaced. Even though this singleton pregnancy has been the antithesis of my triplet pregnancy.

With my triplet pregnancy, I received a detailed ultrasound once every two weeks and had my doctor's office phone number memorized and his private cell phone number programmed on to my home phone. In contrast, I doubt I'll have more than two ultrasounds in my singleton pregnancy and would be hard pressed to find my doctor's telephone number in less than 10 minutes.

With my triplet pregnancy, I was under the constant supervision of a team of Maternal Fetal Specialists (aka: Perinatologists) that would spend the majority of each appointment talking with me about the importance of laying low. In contrast, with my singleton pregnancy, I've got one OB/GYN, on the brink of retirement, that spends the majority of our appointment talking with me about sports.

There is no comparison between the two.

Except my overwhelming desire to eat ice cream.

Because I am an "advanced maternal age" I was presented with the option of performing an amniocentesis a couple months ago. It turns out that not only does your chance of conception decrease as you pass the milestone of age 35 ... the chance of delivering a baby with birth defects increases.

If that's not a kick in the teeth, I don't know what is.

When the doctor asked if I was interested in performing an amnio - I immediately responded "NO." Once again, I was not prepared to put my pregnancy at risk for information - if once obtained - showed that there was a problem with my unborn baby.

But it is on my mind. The potential exists we could deliver a baby with special needs. And this is very scary for me because I am afraid of what a child with special needs would do to our family.

To me.

I am afraid of what a child with special needs would require - and if I have the patience and compassion to handle such a challenge.

I am afraid of what a child with special needs would grow in to ... and what would happen to this child once Charlie and I are gone? Who would care for them?

When I was in high school, I sponsored a child in the Special Olympics who had Down Syndrome and was autistic. Although I don't remember his name, I do remember his family. I remember that on the day he participated in his events - his mother and father both took the day off of work. His older brother and sister took the day off of school. His grandparents were there, his aunts and uncles were there.

There were at least 10 people from his family present to support him ... a frail 7-year old boy who couldn't talk and was unable to feed himself. The love and support for this child was overwhelming. I remember thinking to myself, "Wow. That's a special family." And I also remember wondering if the family was always so close - or if having a special needs child brought them together?

In my life, I've met a lot of people who have conquered cancer. The majority of these people have told me that although they wouldn't wish the disease on their worst enemy ... facing a significant health challenge has been one of the most empowering experiences of their life and they wouldn't trade that experience for the world. Similarly, I've met people that have a special needs child in their life. And these people have told me that although they never would have wished for a special needs child ... now that they have one - they wouldn't trade their experience for the world.

This is something that I hang on to - whenever I think about the possibility of us having a special needs child. Although it may not be something we wished for - it comforts me to think that our lives might be enriched because of the experience.

On the Chinese Lunar Calendar, 2007 is the Year of the Pig. It is not only the year of the Pig, it is the Year of the Golden Pig. According to Chinese Folklore, this is an event that occurs once in every 600 years and will ensure that a baby born on this year will experience a prosperous and wealthy life.

That's good to know.

Maybe it's because I am expecting and I tend to notice these things ... or maybe it's because everyone is rushing to have babies during the Year of the Golden Pig. But everywhere I look, I see pregnant women.

Friends from high school.

Friends from college.

Friends from work.

Neighbors and relatives.

Two weeks ago, I heard from a friend of mine that she was also expecting and due five weeks after me. It turns out that she had not yet told anyone - except her husband - of the pregnancy. Her family did not know, none of her colleagues at work, none of her friends at the gym knew.

Even though a lot of people wait until they pass the first trimester to share news of a pregnancy - my friend wanted to wait until she had obtained the results from her amniocentesis. She was sharing her news with me because like my pregnancy - she joked hers was also a case of Divine Intervention. In her situation, she has two children and was on birth control.

As far as she and her husband were concerned ... they were done having babies.

My friend will turn 40 a month after her baby is born. Although she never completed an amnio during her previous pregnancies, she knew that at her age, the risk was 1/100 that she would give birth to a child with Down Syndrome. But because an amnio is usually not performed until 18 weeks and the results can take two weeks to come back ... my friend would be five months pregnant before she learned whether or not her baby was normal.

Yesterday, I was checking my e-mail and a note came from my friend. Her amnio results came back and they were positive for Down Syndrome.

When she first learned that she was pregnant - my friend was in disbelief. But slowly, she became excited about the prospect of having another baby ... despite it's mixed blessings. Now, she knows that her child would be born with special needs and she is faced with the decision of what to do.

My friend informed me that her decision is to terminate the pregnancy. Obviously, at 20 weeks, this will not be easy. But, that is a choice that she has available to her.

My choice is to love and support my friend.

Although her decision is not one that I would make, I am certain it will be the hardest one she will ever face.

14 comments:

  1. I'll pray for her as she makes this difficult decision. I have a niece with Down syndrome. Jackie

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  2. I am always amazed at how similar our experiences can be. One of my best friends terminated her pregnancy at 22 weeks because the child she was carrying had spina bifida (sp?. Although I don't think that is the decision I would have made I choose to be her friend and support and lover her no matter what. I pray for your friend. My friend has been haunted from this experience and probably will be for the rest of her life. Thanks for sharing this.

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  3. Wow. Isn't it fortunate for those that have learned this news through the results of the amnio and decide to keep thier child only to learn that the result were wrong.

    Isn't it unfortunate for those who decide to terminate - what if "they" or "the results" were wrong?

    I know several women who have had this done and have had negative results - they had to live with this worry during thier entire pregnancy only to discover that they have "normal" children. Yep. "Normal".

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  4. Bless your heart. This is a wonderful and thoughtful post - I appreciate so much your feelings about the amnio (I also refused it - rather cross the bridge when and if it's needed), but your willingness to support and love your friend and respect her choice is phenomenal.

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  5. I'm with you 100%
    first of all doctors can be wrong, but more importantly God never is and he plans our families, I am sure of it.

    Poor friend, that's a tough spot to be in.

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  6. I am one of three biological children, but my family has adopted 19 special needs children. I've caught myself reading your blog daily because 1)you are a WONDERFUL writer and 2) I am amazed at how you do it all on a daily basis. Then I think back on all of my siblings and how in the world my mom and dad did/do it. The truth is God NEVER gives us more than we can handle. I can honestly tell you we have been to hell and back many times as a "special needs" family, but in the end it has been worth it all and I would not trade one experience (whether it be losing a sibling, the public "embarassments", etc.) for anything in this world. Some of the kids we have were attempted abortions that fell through and their time on this earth has been a blessing to all who have known them. I know that God placed those situations in my life for a reason. Maybe that reason is that I will have special needs children of my own or maybe I can be there to help someone with theirs, but there is a reason. I have never been faced with the choice of what to do like that but I can't help but think two things. First off, what would I be missing that God had planned for me through this and secondly, if the God I believe in could create the whole universe in 7 days, could he not heal a child in 20 (or less) weeks? God Bless!

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  7. Jen- What a horrible situation for your friend to be in. We had the same soft markers with my triplet pregnancy but I refused the amnio. I didn't want to risk losing all of them. With Austin, he also had a marker - a cyst on his brain. I did the amnio. Of course he's fine and everything turned out perfect. But if the amnio had come back that he had soemthing wrong with him I have no idea what I would have done. I'm pretty sure we wouldn't have continued the pregnancy but I guess I can't say that for certain. I'm so glad I didn't have to make that choice.

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  8. Your friend is lucky to have a friend like you. It must have been an incredibly difficult choice for her to make and she needs support and love. People can be so judgemental about other people`s choices when really, that is not their place.

    I have a student who is 42 and recently had a little girl. When she was pregnant, she had to wait for ages until the results of her amnio came through and I thought it was yet another anomaly in the Japanese health system but reading your post, I now realise that that kind of thing is unversal.

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  9. thanks for the note on our blog, love yours as well!

    the reduction issue always amazes us. It's a very personal choice, but with so many families that have to hold onto hope that they can conceive one day (and for all those who never do), the first thing they talk to you about after conception of higher multiples is why you want to consider reducing!!??

    We really do believe that God has a plan for everyone, and EACH child is a blessing, regardless of special needs, disability, or anything else.

    Great post, great blog. We'll be following!

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  10. My heart cries for your friend and the decision she has had to make. When we first found out about our quads, our perinatal doctor talked to us about reduction, but made it clear that he wasn't a fan of it. That was such a relief to us! Although the thought of four babies had us terrified, we couldn't imagine purposefully getting rid of any of them! Like many of the other people who have commented here, we firmly believe that every child is a blessing from God, and He knows more about our lives and what we can handle than we do. Neverthe ;ess, my prayers are with your friend. She is truly blessed to have a supportive friend like you!

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  11. God be with her in her decision. I refused the amnio too...with no regrets....even though we just received the official diagnosis of AUTISM for Kyle two weeks ago....and 4+ years after his birth. Special Needs children are a gift from God and I wouldn't trade our Chunky Monkey (autisticourchunkymonkey.blogspot.com) for NOTHING!

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  12. Jen,
    Please send my love and prayers to your friend.
    I agree with your opinion here in supporting her.
    No one can know how her decision was formulated--and how much it pains her--unless they walk in her shoes. So, you are right not to judge.
    Hugs,
    cam

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  13. God bless her and guide her decisions.

    although there certainly are varying degrees of need for each child, i think all children have special needs. the big question is: do the parents have special hearts with which to provide those needs?

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