Where are all the Downs babies?

Today was first going to be my new angels.  Then they were going to be tomorrow because I need to show you a photo of where they’re going to be saved and cherished.  So today was going to be my agony over rumors of Sanjay Gupta’s Surgeon General appointment. 

I changed my mind again.  I had to look for an op-ed piece that was published a little while ago.  Given my chemobrain situation, I figured once I found it, I should go ahead and share it here:

This morning I sat at Mass with my family.  I was a bit distracted by my six month old, George,who was trying to get my husband’s attention with his newest tricks… grabbing noses, blowing bubbles, trying to sing (or at least that’s what we call it…)  When George does all those regular baby things, we rejoice more than we did with all his older siblings, perhaps, because George has Down Syndrome.  After the doom and gloom prognosis we were given for him, it’s wonderful as we realize each day that he’s overwhelmingly more LIKE his siblings than different from them.

 

But anyway, I sat in Mass today wondering where all the other Downs babies are.  Last week we were at a violin concert, and there was a happy, busy four year old with Downs sitting behind us, anxious for the concert to be over so that he could resume our conversation about going to kindergarten.  In May, I was at a homeschooling convention, and at one point there were three other babies with Downs in one room  while I was there with George.

 

So where are the Downs babies at my church?  There’s a wonderful young man, Nathan, who has Downs.  He was in my Sunday school class several years ago, but he’s on his way to middle school now.  In my eleven years of working with every First Communicant at our parish, he’s been the only Downs kid to celebrate that precious sacrament.  Nobody I’ve asked has been able to think of a Downs baby baptized at our church in the past few years, other than our George.  I can’t think of any reason that Catholic moms wouldn’t conceive just as many babies with an extra chromosome as the rest of the world’s women… so where are the babies?

 

90 % of all babies diagnosed with Downs prenatally are aborted.   From personal experience, I can tell you that the obstetrical care system is a strong force and truly a challenge for even the most passionately pro-life families.  It starts with early prenatal care and screening, which is valuable and positive for many reasons… but as soon as there is even a remote possibility of a problem detected with the baby, all the relationships change.  It’s called Poor Prenatal Diagnosis – or PPD.  When obstetricians diagnose  PPD, the system goes from one geared towards investing in the health of mother and baby into a fast-paced, frightening, very negative organization. 

 

When our family learned that our baby likely had Down Syndrome, we made it absolutely clear to everyone that we would keep our son.  We had lost a baby a few years ago to complications from amniocentesis, so we refused that, too.  It amazed me, though, how much time and effort it took to go against the flow.  Wouldn’t you think that when a family is struggling to deal with a problem with their baby, these professionals would try to support them, not make life harder?  Things got more difficult when we had additional pregnancy complications that required a specialist.  Finding a maternal fetal medicine doctor  who would work hard to bring our son into the world in as healthy a state as possible required so much time and grief. 

 

We managed to resist the force, and we got to keep George.  He was premature, and he has Downs, and he brings joy to our family.  But do you remember Newtons’ Third Law from high school physics?  “Every force has an equal and opposing force?”   Well, maybe there aren’t any other Downs babies in my church because the force of the fast-paced, frightening, non-pro-life obstetrical industry isn’t being met with much of anything to oppose it. 

 

How can we create a force, equal in speed, strength and power to that of the medical system, to support families dealing with bad news about their baby?  Our force must be positive, peaceful, honest, and gentle.  Families in this situation are so vulnerable.  It must be visible and immediately available.  Often medical things happen so fast that if parents don’t know about supportive options ahead of time, it might be too late.  And finally, it must be integrated fully into a culture of respect for life, no matter how brief, no matter how handicapped, in every aspect of our faith community.

Tomorrow, angels, then Friday, Sanjay Gupta.  Unless I get distracted again.

Love, Elizabeth

 

 

 

6 thoughts on “Where are all the Downs babies?

  1. Dear Elizabeth,

    Thank you for your strong stance on perserving life. I know that George will present you with challneges, but I can’t help think about the joy he has brought to your family. He is indeed the angel. God knew that George would be loved and supported by all of you. No matter what is ahead for George and Danny, they both will know how much they are loved.

    I’m having lunch tomorrow with your mom and another friend, Carla, and she is going to bring the sweater you knit her. I, in turn, will bring my teddy bear sweater to share. There will be no commonalities between the two pieces except that they were both knit.

    I so appreciate that you are willing to share your struggles, your fears, your triumphs, and your blessings. Nancy

  2. sadly I agree with you ~
    I don’t see many children w/ DS in church.
    (although I must admit some times those in the narthex see us quite a bit more and at times it gets hard to continue to go to mass. )

    I am so glad I met you and George! You are an inspiration & George will be too!
    I’m so glad you stand up for your family! I wish the world would understand that God uses us all. He has a reason for George & Kaitlin too~ He didn’t make a mistake. He created them in His likeness too!
    They will do great things for Him in their own time!

    love
    Kristin

  3. Pingback: Where are all the Downs babies? « Keep on Spinning | Baby-step

  4. Dear Elizabeth,

    “I so appreciate that you are willing to share your struggles, your fears, your triumphs, and your blessings.” Those are my sentiments exactly. I share your comitment and support of life. Your family is such a beautiful example of that commitment.

    I worked with your mom tonight and it is so good to see her again.

  5. Thank you for sharing your essay. The topic of Down’s babies has been heavy on my heart for a year now. Society is blessed by the way you are witnessing the pro-life message every time little George is out and about.

    And I’m so sorry to hear of the loss of your baby a few years ago.

  6. Well I can say from a similar experience with my son (5), wo has regressive Autism, that perhaps these families simply are not at church services. We found it incredibly difficult to bring our son to church. No one understood the challenges we faced, the needs he had, or the stress it brought to us. Certainly that is the one place where we should feel some relief from the stresses in our daily life. Not to mention the effort it took. By the time we would actually make it to a service, we were spent.

    Over the last few years he has improved leaps and bounds, but it was all a result of hard work. Now we are to a point where we have so much going on for his weekly therapy that church seems like such a luxury… and we are still fighting to find the right fit. Perhaps families are having a similar experience in your church?

    As far as the health care system is concerned…
    It saddens me to think that lives are lost. It makes me sick to think that anyone would base a decision on those unreliable tests. But even if the tests were reliable… what a shame it is not to bring another unique soul into this world.

    I wouldn’t ever pretend that having a child with extra needs isn’t difficult. It took me a long time to come to terms with my son’s regression, but I don’t love him any less than my “typical” son (nearly 2 years old). Nor did it scare me off from having more children… our third is due in June. Most people have challenges in their lives. George’s will be unique to him as yours are unique to you. I would dare say it is these challenges and how we overcome them that truly make us who we are. You learn to fight a little harder, love a little more, and in the end everyone is better for it.

    George is so blessed to have such a loving family.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: