When Regina was pregnant with our three children, people would ask if it was a boy or a girl. When I responded with, “We don’t know,” I was met with the ubiquitous, iniquitous, mindless, and moronic refrain:
“As long as it’s healthy.”
I would challenge this well-intentioned, ill-thought well-wish with:
“If it isn’t, we’ll love the child all the same, and even more.”
That shook people out of their torpor and made them realize exactly what they were saying. It usually left most pretty angry with me.
“Can’t you just accept a good wish and leave it at that?” was the reply of one associate.
It’s a valid point, but one that fails to own up to what was being said. “As long as it’s healthy,” is a world apart from, “I wish your child health and happiness.” Even in the absence of health, one can have happiness, fulfillment and contentment. In an age of increasing reliance on pre-natal technology to murder the pre-born for the crimes of being female, male, having cleft palate, clubbed foot, spina bifida, Down syndrome, trisomy 18, etc…, “As long as it’s healthy,” rings deadly ominous. It needs to be confronted.
Thomas Jefferson wrote the antidote to our eugenic mentality in a letter to his daughter, Patsy. It stands for all time as the most eloquent reproach to the intolerance of imperfection:
Every human being must be viewed according to what it is good for; for none of us, no, not one, is perfect; and were we to love none who had imperfections, this world would be a desert for our love.
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I have to admit as the mother of a perfectly lovely little girl with Down syndrome, that expression grates on my nerves. I try to understand why its said, and not be offended, but its not easy.
Thank you for this post Dr. Nadal. As a mother of a precious child who is 6 1/2 years old and has full trisomy 18, I understand the gift of a child who is not “healthy.” Our little Peter is the happiest person I have ever known. He doesn’t have the worries or concerns most of us have. He just loves being loved by his family and friends. His presence in our family is so strong, that when he was in the hospital for a few days, his sister commented that our house was a dismal place of gloom without him. He is everyone’s favorite and the one everyone misses the most when apart from. He is a bright light of pure love. We were told to let him die after birth, because caring for him would be a horrible burden for our family and if I wanted to be a good mother to my other children, I wouldn’t bring this child home. I can not even put into words the blessing and gift this little boy has been to so many. He has never spoken, but has taught us so much. We were told he would never contribute to society and we should think about resources. He has contributed so much and has given to others so much. The fact of the matter is not anyone of us is perfect. These babies with special needs who are aborted at rates of over 90% are a gift to help us become better and more compassionate people. These children are teachers of our souls and are given to us by God for a reason, they are a sign of His merciful love. God will never stop helping His children get to heaven, helping us become more like Him. These kids help us grow in virtue and there is an important place in the world for them. Peter helps us live out the lessons Jesus came to teach us every day. To parents who may get the news their baby may not by healthy, please do not be afraid to embrace this special gift from God. God knows what He’s doing:)
Thank you for this. There is a corresponding response from the faithful – eqaually well-intentioned, that also sends an odd message. After there has been a diagnosis (esp a genetic syndrome, like Down syndrome), one of the worst things you can do is say, “I’m praying for a miracle!” – when the proper response would be, “I can’t wait to meet your sweet baby” . . . we sometimes grab at platitudes without thinking that an even simpler, genuine reaction would be all that is needed to show that you are concerned, but accept the child that God is sending.
The goal I guess is not to be so prickly that people are afraid to talk to us (or rather, to each other). I think we just meet the response with a kind, but intstructive comment – as you suggest, and leave them with their own reaction, be it surprised or angry, or whatever.
Nice post. I wrote an essay about my little “perfect” girl.
WHEN WHAT SEEMS BROKEN IS PERFECT
The graph is still taped to the inside of my kitchen cupboard, pencil on a string dangling down beside it. It depicts the progression of my newborn daughter’s weight, most days showing a moderate increase and thus reflects a thriving child. It ends abruptly at 80 days.
How can the value and purpose of a life be determined? Can these be measured by longevity, intelligence or the productive contribution of an individual to the economic base of society? Even more important, who has the right or ability to make this judgment?
My husband and I were recently faced with a very difficult situation. We are in our 40’s, educated and financially stable. We have 5 children at home and we love sports and travel. The kids do well at school, are athletic, and all are healthy as horses. Life was good to us. We were pleasantly surprised when we discovered that we were expecting a new life to love and nurture.
We first heard of our unborn daughter’s genetic condition long before she was diagnosed. It was considered a lethal condition, an extra 13th chromosome. Most babies don’t make it to birth and those that do live a few years and are severely disabled. I thought, “Well, what is the point of that life?”
When the geneticist uttered the dreaded words, “your daughter has trisomy 13” and it was a diagnosis about my baby and not someone else’s, the reality was entirely different. With the ferocity of a lioness, I wanted to love and protect this little girl, and do all that I could for her. If her existence was only to be a few more months of kicks and flutters in utero, then I wanted her to have that life for the sake of both of us. We named her Annie.
After the diagnosis, the research began. It was frantic, and went long into the night for months. We researched medical details and personal stories. We communicated with parents all over the world who had a child with this very rare condition. We discovered that the babies can live longer, but they may need a lot of medical treatment. The most amazing discovery was that the parents continually stated that they treasured and delighted in every day of their child’s life. They knew with certainty, that the gift of that life was not theirs to keep. The children, called “survivors” were blissfully happy and progressed developmentally, albeit slowly. It became increasing clear to us, that unless the medical intervention to provide life was excessive, Annie was better off alive than dead.
We were not sure how we could do it. I was the kind of mom who usually forgot to pack a diaper bag. I would often be impatient when one of my children couldn’t master the math skills in their homework. Could I ever develop the patience for a child who may not be able to sit on her own for a year? How could we fit Annie’s care and needs into our busy schedule? We had 5 soccer teams in the summer! We were more frightened than we had ever had been in our lives. Love for Annie compelled us forward.
Annie was born full term, crying. She was mildly afflicted, as the syndrome goes. She needed a very small amount of oxygen and had hypoglycemia. Annie could not take all of her nutrition orally and so she had an NG tube (nasal gastric tube), which was a tube that went in through her nose down into her stomach. I became skilled at its reinsertion, every 3 days. We fed her expressed breast milk. Somehow, we dealt with all of the issues. We knew that with time, Annie would take more feedings orally and her need for oxygen would lessen, and likely be eliminated completely.
We were aware that the first year would be rough. Everyone pitched in. Our 12 year old son took over the lawn maintenance and his older sisters took on Annie’s developmental progress and bought “mind stimulating” music and ordered her a “Bumbo seat” to help develop strength.
The whole family came together in ways that I never dreamed possible. We discovered how true our friends and family were by their support and encouragement. Somehow, the homework got done and the gang made it to their soccer games.
At age 75 days, Annie smiled at us for the first time. Even now, a year later, the memory of that first and only smile causes me to cry.
Annie experienced respiratory distress at age 80 days and was transferred by ambulance to the Children’s hospital. The physicians told us she had pneumonia. Our beloved baby died less than 24 hours later.
There are two ironies to this story.
The first is that we thought we had a choice of life for Annie but the reality is that we did not. The medical records, which we instinctively felt compelled to obtain and have had reviewed, reveal no signs of pneumonia. An effective “Do not resuscitate” was ordered without our knowledge or consent. The final computerized medication report from the intensive care of an excellent hospital is inexplicably missing.
The hospital issued a letter of apology stating that sometimes “communication does not occur in as clear and consistent a fashion as we would wish. For that, we are very sorry.” Recent developments in medical science can be used to diagnose and terminate certain lives but the choice to use medicine to prolong these lives doesn’t seem to be an option.
During her 80 days, our little Annie taught us our greatest lessons in life. Through her life, we experience the deepest sorrow and the most intense love. She taught us the true meaning and purpose of life and we are forever changed as a family. Our children have learned that if they are ever in need, their family will love them, protect them and do anything to support them just like we did for Annie. They developed an incredible empathy for the disabled and the vulnerable.
The ultimate irony is that this little girl who seemed so broken, flawed and seemingly without purpose or value, was in fact, perfect after all.
Amen!
If anyone is interested in becoming a parent to a child with Trisomy 18, there is a little boy in Russia who desperately needs an adoptive family:
http://reecesrainbow.org/shaun-etkf-region-3
(Dr. Nadal, if you want me to stop posting adoption links I will, but it seems appropriate when people are discussing children with genetic differences.)
Wonderful article…thanks for posting. When I found out at 5 months pregnant that our child was Down syndrome, many people responded with “Oh, I’m sorry to hear that”. My response was “Well, we are actually excited and happy about our blessing”. When I told one friend who I don’t see often she had the most wonderful, instant, warm response — “Oh, that’s great…they are the sweetest people on earth”. I hugged her and cried and thanked her for her natural response.
And I also agree that praying for a miracle is inappropriate for a child with a genetic difference. Nothing is going to stop a child with Down Syndrome from having Down Syndrome. God can’t take it away any more than God can take away the child’s gender. Pray that the little one with Down Syndrome will be healthy, bright, friendly, whatever, but he or she will have Down Syndrome.
There is also a little girl in China with Trisomy 13 waiting for a family: http://reecesrainbow.org/lisa
Annie’s mom thank you for your beautiful words- is your essay posted anywhere else online so I can share it? I am so glad you got that smile…a gift to you…
What an excellent post. I too am bothered when people make that statement. A child is a beautiful gift, whether they meet someone’s criteria for “healthy” or not!
Annie’s mom, thank you for sharing your journey. ABSOLUTELY beautiful! Your ending is poignant. “The ultimate irony is that this little girl who seemed so broken, flawed and seemingly without purpose or value, was in fact, perfect after all.”
So glad you were so blessed for that time with your beautiful little darling Annie!
Dr. Nadal, thank you for your words as well. I say this often to many. As the mother of a healthy little girl, who happens to have Down syndrome, your post hit very close to home. Thank you for saying it!
@Angela. Thank you for your kind words. My essay is posted on the trisomy 13 site here:
http://www.livingwithtrisomy13.org/prenatal-diagnosis-trisomy-13-essay1.htm
Annie’s story is published in 3 medical journals- one of which is available free online here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2532897/?tool=pubmed
you know I think in today’s world and in the context of what is happening with so many women aborting, genetics testing and IVF etc, I think the statement “as long as it’s healthy” is definitely the wrong thing to say because it does imply that anything less than perfection in a child is second rate. Of course we all have something amiss with us – not one of us is perfect physically, emotionally etc.
However, I do believe that in years past, in my parents generation for example (and my dad is now 91, God bless him!) the expression “as long as it’s healthy” really was considered a blessing since so many babies died either during childbirth or throughout infancy. So a healthy baby was considered a blessing and something to be hoped for. My parents said this to my cousins without thinking much about what they were saying until times changed in the 1970’s and my mom started doing prolife work. Then she too thought twice about saying it and thinking more about what she was really saying!
So I think possibly it meant a different thing to a different generation. For many children of that generation not being born healthy may have meant an a lower chance at survival since medical care was not what we have today. A healthy baby meant a chance to survive in an era when so many died. (My grandmother lost at least 5 of the 15 pregnancies – that is I had 10 aunts and uncles!).
However, I do agree with what you have written here. It’s time the saying is dropped. Times are different and parents and society have changed in many ways for the better. There is less stigma in some ways, more integration and parents like Annie’s mom allow us to see life from their perspective. A great blessing.
Thank you Dr. Nadal for posting this topic again. I believe it it the tip of a very large iceberg that is emerging in our “perfect” society. For those that say there are no more heroes they need only to look at these families asked by our Creator to love in the face of opposition. The answer to the prayers for a miracle is a super-abundance of Grace.
I love when people think! Thanks Gerry for making all of us think.
To Annie’s mom:
Thank you for sharing such a beautiful part of life with us. I think those who have not felt love and purpose through the struggles are the imperfect ones.
You’re welcome, All.
Thanks for letting me rant a little!