Tuesday, November 9, 2010

A glimpse into helplessness

The dream of parenthood has been on our radar for the last four years. We had known right from the start that this journey would be a challenging one and nothing could have prepared us for what lies ahead. Fast forward four years and today, I am 14 weeks pregnant and very grateful. Right from the start, we made a pact that we want to know everything about this pregnancy – hopefully, more good than the not-so-good.

Last week I experienced a small glimpse into what it really means to feel helpless. It’s not about desire for control. It’s literally about helplessness that we are unable to do anything except wait and pray that all will be well in due course.

At 12 weeks, I underwent a Nuchal Translucency Test by choice, to ascertain if our twins were at any risk of chromosomal abnormalities such as Down syndrome. The first half of the test done via a high tech scan was absolutely delightful. We saw both our children – at the right size, heartbeats sounded like galloping horses, one was sucking fingers of the left hand (I am left handed), the other kept shielding the face (just like Jared would), they were kicking, hiccupping, etc.

It is such a privilege to be able to witness their amazing growth all thanks to modern technology. Our hearts were aflutter with joy and relief. Then reality hit. Twin #2 has an enlarged bladder and a 1 in 71 chance of having Down syndrome. We were and still are grappling with this news.

Yesterday, we met with our Obstetrician who offered us the opportunity to explore our options, verbalise our concerns and values which led to our eventual decision. We understand that many couples have been in our position and have come out at the end, relief that all is well. We sure hope we are one of those many lucky and bless couples.

For us, the risk is much too high for us not to do anything about it. It would be highly unfair on the child and on us not to do anything and proceed to full-term with the knowledge that there may be a potential problem because if it is an undesirable outcome, there is no turning back from then on.

In coming to terms with the decision of undergoing Amniocentesis at 16 weeks and having been made fully aware of the risks involved including 1 in 200 chance of miscarriage, it is a single question that gave us the impetus to proceed and that is “What can we not live with?”

The image that comes to my mind straight away is that of a 70 year old man pushing the wheelchair of a physically and/or mentally disabled adult child aged 33. That is the mental picture I cannot live with. That is not the quality of life we want for our child, let alone the impact it will have on our marriage.

The Obstetrician then offered us the synopsis of a “normal” Down syndrome child (who goes to a normal school) and a “not so normal” Down syndrome Child (with multiple organ failures). I stopped him and explained that both Jared and I come from a family of educators and many of my closest friends are school principals so I am more than acutely aware of the reality of having a child with Down syndrome. The impact on the family is very real and it is for life. We are the ones who will have to live with it daily, not anyone else.

Our obstetrician nodded his head in agreement. His silence further re-affirmed our decision which has not been made lightly.

We hope for a favourable outcome which assures us that all is well so that we may breathe a little better and enjoy this miraculous pregnancy a little more. We love them both very dearly and like all parents, we just want to give them a good quality of life that affords them independence and the ability for them to live life to the full.

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