Monday, July 9, 2012

A perfect formation

Our long awaited meeting with genetics took place this morning at Children's Mercy South, near our house in Overland Park.  It was nice to meet with the specialists closer to our home and avoid the drive into downtown.  A friend watched the older boys for us so we could simply take Jude.  We got into the appointment quickly and were greeted by two specialists, both of whom shared our concern for Jude's best interests.

From birth we have been advised to meet with this team in order to clarify further Jude's condition; whether it is part of a larger syndrome and if there are bigger issues to be aware of further down the line.  This has been a scheduled appointment for over three months, going to show how difficult it can be to get into the office.

The appointment was largely good news and confirmation of many things we've come to believe.  The doctors doubt Jude has a broader syndrome and his microphthalmia in both eyes is an isolated case, likely.  What is unknown is how Jude formed with this condition.  Was it something that Joanna and/or I have always carried, something that came about post-conception, or is it a mutation in the genes simply in either the individual sperm or egg?  We may never know.

Here was our dilemma, should we follow up and do further genetic testing to zero-in on the answer to the above questions?  The doctors offered us this route and discussed the reasons one would proceed with genetic testing.  In no way did they say we should or shouldn't, but laid out the realities of what the tests can show.  Ultimately, we've decided against further testing at this point.

Why we have chosen to not test Jude further.

We love Jude.  Our love for Jude can not grow nor diminish by an increased awareness of why or how he formed.  His medical treatment approach would not change based on these tests.  In all likelihood all that would be gained is a clearer understanding of whether or not Joanna and I would have another child born with this condition and/or what Jude's chances of passing this trait on are.

So the question then becomes, do Joanna and I want to know the odds of having a second child with microphthalmia and further, what does that number really mean?  In the same line of thinking, are we open to another child and another child with this potential unique need?  Whether we openly stated it to each other before, the answer has been yes for all of our pregnancies, and will continue to be yes.

Together we concluded a few things.  If we have another child, we don't want the decision to be based on a medical test of odds and chances.  We are not ignoring medicine and science, but rather acknowledging its limitations.  Science and medicine are not at the point where they can map a person's life out.  So you rule out one thing, are you going to be mad if your child is born with something else or develops a condition in the years to come?  The fact is, you can't test for everything.

A second consideration for us: are we conditionally open to life?  If we answer yes, what are we saying about Jude, his dignity and his potential now living with microphthalmia?  And third, we both prefer for Jude to make the decision later when the time comes with regard to his children.  Maybe he'll want to know his chances of passing this to a child.  Maybe he'll say, why does it matter?  But, it should be his decision.  This will be an ongoing discussion.

I want to stress importantly that should someone in a similar position do genetic testing, they are not wrong to do so.  This is a personal decision for our family where we own no moral high-ground, and one can be just as open to life and choose to do the opposite for great reasons.  For us and for where we are now, the results simply won't change our approach.


I would be remiss if I did not mention the integration of our faith in our approach to this topic.  As Catholics, we embrace our role as active creators in God's kingdom.  Created in His image and likeness, we too create out of love.  This gift of creation comes with the responsibility to act within the realities of our existence and with our actions' consequences.  Science and medicine are important tools that should not be ignored in arrogance of faith.  But total reliance on science is similarly impractical.  I think our approach and faith marries the two.

St. Jude: Pray for us.


  1. Beautiful. Jude is blessed with amazing parents. We are so happy to hear the good news that there aren't other issues and we fully support your decision!

  2. Another fabulous post from amazing people! I think John and I would do the exact same thing. I hope you'll be adding this to the book you should write! Thanks for bearing witness to your faith. :)