Old editorial on Poor Prenatal Diagnosis

Last night my friend Tracy Winsor emailed me to ask permission to reprint a column I’d written a few years ago about prenatal diagnosis of Down Syndrome.  I had to email her back giving her permission but admitting that I absolutely could not remember what piece of writing she was talking about 🙂  Chemo brain is bad, bad, bad.    I assume she wants it for a conference she’s putting together…

So this morning, she emailed me a copy.  I couldn’t open it.  Like I said, chemobrain is bad.  So I asked her to copy and paste it into an email so that I could read whatever it was that I wrote.   I felt quite guilty… she is, I think, just about the busiest person I know.  Homeschooling mom, six boys, but working more than full time with this ministry as well as personally providing care and support to women chosing to carry to term despite poor prenatal diagnosis.  Of course she sent me a copy, right there in the email, and I immediately remembered writing it…  but it WAS a long time ago… pre-cancer even… so I thought I should put it up here in case I needed to find it again sometime 🙂

Poor Prenatal Diagnosis

Elizabeth S. DeHority, MD

 
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 his older siblings 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 babies with Downs 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 an education conference, and at one point there were three other babies with Downs in one room while I was there with George.
 
So where are the babies with Down Syndrome 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 child 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 fetal problem all the relationships change. It’s called Poor Prenatal Diagnosis – or PPD. When obstetricians provide a 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 probably 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. I was, however, amazed at how much time and effort it took to go against the flow. Why would these professional make life more difficult for a family struggling with a PPD?  Why wouldn’t they be supportive of a family carrying to term?  Things got more difficult when we had additional pregnancy complications that required a specialist. Finding a maternal fetal medicine doctor willing to help us bring our George into the world in as healthy a state as possible required so much time and grief.
 
We managed to resist the force, and we kept 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 babies with Downs 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 which could 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, our effort to support these families must be fully integrated into a culture of respect for life, no matter how brief, no matter how handicapped, in every aspect of our faith community.
 
PS… to Mrs. Foss … I really, truly do have photos from the knitting date with Ann V. … we brought Sam along as our official luggage carrier, George entertainer and knitting photographer.   I’ll put them up as soon as this particular chemobrain flareup gets a little better 🙂 
 
 
 

 

18 thoughts on “Old editorial on Poor Prenatal Diagnosis

  1. So good of you to post this here, Elizabeth, as I don’t believe I have ever read it, despite being very fond of the BNA ministry. It is stories like this that remind me to be so thankful for our practice of 100% prolife doctors, as we tend to take them for granted. (when they told us about Eliza’s AVSD and DS they said ‘you don’t want an amnio’) My dream would be to have BNA cards and materials available in every OB waiting room. Wouldn’t that make a fabulous service project for some young people? George needs to do more PR – I want to eat him up!

  2. Thank you so much for writing this! It is sad to think that in CHURCH of all places, where being pro-life is not challenged or criticized but celebrated, there are still abortions taking place. Especially sad to think of all the extra-special babies who will never have a chance at life because doctors are pushing parents to only have “perfect” babies.

    You are an amazing woman and mother, and George is perfect! Prayers for you and your family.

  3. Thank you for this. I didn’t know prior to birth. I really respect the folks who did and who stand up for their unborn children. It seems that this stance is becoming more rare than ever. My son has DS and is now 18 years old. My heart aches for the families who will never get to know the joy I’ve known possibly due to the pressures they recieved from their medical professionals.

  4. thank you so much for your article. it is so timely for our family. we are currently faced with a possible “poor prenatal diagnosis” for one of our twins. despite being very clear about our wishes to support both of our babies AND the fact that i’m an ob myself and completely understand what we are facing…….we still are being bombarded …..first with recommendations for selective reduction, then recommendations against resuscitation for even our “healthy twin” at 24 and 25 weeks of gestation, and now with constant reminders that we “should” not consider our “unhealthy twin” with low amniotic fluid as we make decisions. even with all my training, it feels like we’re fighting a battle for our babies. (actually, we are facing a battle.) If we feel that way, what is this like for nonmedical families? it is not even certain that our “sick” twin will do poorly at birth! we were already aware of perinatal hospice and organizations like be not afraid. what would be happening if we were not well informed, proactive and stubborn in caring both twins? i’m afraid of the answer to that question.

    • Dear Kristi…. Thank you for loving your dear little one already and advocating on his/her behalf now. I am praying strength and courage for you right now. You are a beautiful mama.

    • Hugs to you and prayers, Kristi. I have a thousand things to say and I know none of them would come out right. So just know that I hold you, the babies, your family, and the medical team in prayer. I know of total miracle stories, and I hope that your story will be yet another one. My friend in Texas has two beautiful girls who had twin-to-twin transfusion syndrome. Because my friend and her family would abort neither, the medical team said neither would survive. Those beautiful baby girls were literally prayed to life. They are both well nowadays! When they were in NICU briefly, doctors and nurses came from all over to marvel at the baby girls who beat all the odds. Each one had a rosary on top of her incubator. The family made it very clear that the miracle babies were prayed to life. Hugs and prayers to you. I look forward to reading your miracle story. Esther Paris in RI

    • Kristi,

      You probably know the BNA website, but not the BNA local service, and we would be happy to support you. We are about journeying with each family with a willingness to listen and support and be present. We have an article coming out in “Ethics and Medics” which deals specifically with a mom who had one typical twin and one atypical twin, and our commitment to both no matter the prognosis…not matter the outcome. You are welcome to call me at 704.543.4780 or 704.906.9916.
      I will traveling today to meet our newest set of twins…conjoined. Please hold them in prayer.

      Blessings, Kristi.
      Tracy Winsor
      BNA

    • Kristi, my heart goes out to you having to fight this battle. Know that you and your babies will be prayed for by more people now that you have posted this comment. Do you feel that you have a solid support system in place? Do you have a CaringBridge page, or something similar, to update others and help them (us!) know how to pray?

    • Praying for you Kristi as you go to battle for the lives of your precious twins, not only for their sake but as you are a shining Light in this dark, dark world we live in. May you be comforted and buoyed by all the love and prayers of those interceding on your family’s behalf!

    • Dear Kristi and all mothers of babies with special needs,

      Thank you for giving life to your child. Each day loved in your womb growing closer to your heart. Often not knowing how your baby will emerge, when and in what condition…this life is beyond our creation. He always was. He was designed with a purpose: to love. To teach us to trust in God, know His constant goodness and love. We try not to number his days. God is in charge of this area. He knows the days for each of us and His plans. There is peace in this, knowing God is in these days.

      Yes, I am a mother chosen to be sent a child in my womb who didn’t quite develop like other babies. The odds were against him. I struggled in letting satan fill my thoughts and give me doubts in God’s Holy purpose to His beautiful creation. I’d think, “If only you hadn’t been so selfish and wanted another child, he wouldn’t suffer so.” And, “You must have taken a medicine or done something…THINK! What caused this?” Lies.
      Following our son’s birth, I became angry with God for not healing him. I believe it’s in His power to do so and didn’t understand His permissive will in choosing to not. In time, God and I recovered, I’ll skip ahead to where we are now. God’s permissive will allows those things we don’t understand to happen. Yes, He even allows our freely chosen will when we stray. It’s His perfect will that always brings goodness and a positive reflection back to His grace. The two wills…perfected in the end.

      Our son is a treasured gift. Generous gifts sent by God to a few select families…WE are the blessed and special ones, if only we learn to cooperate with His will and allow Him, in time, to perfect it. A new chamber of love within our hearts is broken free as we learn to love and are loved in our relationships with our special needs children. We like to think we know how to love unconditionally before they come to us, but ask any parent and they’ll say, even the siblings love in a new and more freeing way when this wonderful baby entered their lives.

      We weren’t faced with negative options/opinions while our son was struggling. I think there must have been something different about me because no one suggested abortion, ever. We made it clear from the beginning he was a keeper! (He is live birth #7.) Maybe it’s my obstinate “joking” that set everyone back. I just feel when you’re in the baby business, you should want to deliver me a baby! (There’s that attitude again! 🙂

      I’ll pray for you and for all those you come in contact with throughout your children’s lives. May you be met with compassion and wisdom. And a dose a good humor when you need it!
      God bless you,
      Kathi

  5. I am touched beyond words at all the responses. Please do continue to pray for our little boy and girl. I know that God hears and intervenes. We know that God has a special plan for each one of our children and will never give up on them! Ann, I cried when I read your comment…..thank you, thank you… you are the first one to call me a Mama…….

  6. What a wonderful statement to LIFE!
    I’ve enjoyed visiting your blog today. Thanks for the comment you left on mine a week or two ago.
    May God be gracious to you and give you peace…
    Rebeca

  7. To Kristi-I will pray for your sweet children.

    Elizabeth, thanks for sharing this article. My brother with Down’s is 20 now. My parents didn’t have any suspicion before his birth, but it wouldn’t have changed anything if they had. Ian is a delight to our family and we cannot imagine us without him, or him without his extra chromosome. It is a source of deep grief to me to think of all the children like him whose parents deny them the chance to live life. It is a terrible wrong.

    I always love seeing George pictures. He’s adorable and he makes me think of my brother at that age.

  8. Thank you for this post–I found the whole prenatal test thing very daunting, and my babies were healthy. But when I was 35 (advanced maternal age, who knew?) and said I wouldn’t get genetic counseling–well, things got downright tense in that room. While I’m not looking to get pregnant now at 40, I often think of what I would face should I find myself pregnant, and quail a little inside. God Bless you strong mamas, and people doing good work on behalf of all of the babies out there.

  9. Pingback: Floods. Rain and tears. « Keep on Spinning

  10. A great post and a sad reality about the rate of abortion for babies with Ds. Thank you for loving George just the way he is ~ what a blessing he is to the whole world! Your courageous battle with cancer and the way you gracefully accept your suffering is very inspirational. Thank you for sharing your life.

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