As long as it’s healthy. But what if it’s not?

Six months into our pregnancy with Henry, after our spina bifida diagnosis, my husband and I would make regular treks up to Park Ridge to see the Maternal-Fetal Medicine specialist, who kept us abreast on how the baby was doing in-utero. Since I’m extroverted and I adore small talk, I started chatting up the receptionist as we were filling out some paperwork, post-appointment. At this point, we had already been told by two separate doctors that Henry would be totally paralyzed from the waist down.

We started talking about her kids — three girls! — and I asked her if she preferred girls, or if she might try for a boy. We both quickly agreed that the baby’s sex wasn’t really that important — boy or girl, they were blessings.

“Oh, I like girls, but it doesn’t matter to me!” she exclaimed. “You know, as long as they’re healthy and running around!”

I felt it and Lou felt it, simultaneously — that hot knife of grief in the belly. I think he actually winced. I laughed, bewildered, and said something like, “LOL I KNOW RIGHT? HAHAHA OTHERWISE IT WOULD BE AWFUL, WOULDN’T IT, IF THEY COULDN’T WALK???” and then slumped back to the waiting room with my paperwork.

Later, on the ride home, Lou bristled. “She works for a maternal-fetal specialist,” he grumbled. “What was she thinking? Healthy and running around? What the hell?”

That phrase has haunted me, ever since we found out that our child would be born with a birth defectAs long as it’s healthy! People chirp at you, when you talk about finding out the gender. Boy? Doesn’t matter! Girl? Who gives a shit! Nothing else matters but perfect health! And once you discover that your kid isn’t healthy, it almost feels like a threat.

Because what if it’s not healthy?

What then?

That phrase terrifies me. Because we’re talking about our children — an arrangement that’s supposed to be unconditional — and as long as they’re healthy! is alarmingly conditional. Everyone’s happy for a new baby and congratulations are in order — but only under certain criteria. Right? And if baby doesn’t meet that criteria, well, all bets are off. All the congratulations vanish. Your support system bottoms out from under you. People start whispering. Doctors start talking about going in another direction. Changing the course of the pregnancyDisrupting the pregnancy. Termination. Because, clearly, if your child isn’t picture-perfect, a SWIFT DEATH is preferable.

It’s not wrong to want a healthy baby, make no mistake. Nobody prefers a medically fragile baby. Nobody wants to see her child suffer. So we wish for health. We make ominous, defensive, vague statements. Everything will be okay — unless it’s not! 

Let’s retire that phrase. Shall we?

It’s time to stop putting health on a pedestal.

Is health important? Uh, yeah, duh. Is it the summit of our human experience? Is it the sole quality off of which we should determine the worth of our children? No.

We need to move past this fatalistic attitude we have that says a life with a disability is tragic and hopeless. We need to get over the idea that a handicapped baby is better off dead. We’ve had handicapped presidents, for God’s sake. We’ve had handicapped olympic medalists. One of the most sought-after motivational speakers on the planet has neither arms nor legs, and I’ll bet you a hundred bucks he’s smarter and more physically active than I amFor the love of God, one of the most poetic and well-written books in existence was written by a man who could only blink his left eye.

And when we say as long as it’s healthy!, we’re negating all the unlimited potential we have as human beings. We don’t need to be “healthy” to be heroic. And we shouldn’t need to be able-bodied to be considered human beings.

And when we say as long as it’s healthy!, we’re telling parents that our support as a society is conditional. Have a healthy baby, and you’re golden. Come back from your ultrasound with a special needs diagnosis, and we’ll need to start discussing your options.

Come on, society. We’re better than that.


29 thoughts on “As long as it’s healthy. But what if it’s not?

  1. I understand where you are coming from. JOYFUL, WELL MANNERED, and KIND to everyone. Those are good hopes for a child. Do I want healthy? Absolutely, I don’t want my children to suffer, I don’t want my children to die before me, and I don’t wish that for any parent, but I completely understand where you are coming from. A successful life and joyful life can and will be achieved. Thinking of you!

  2. Thank you for writing this, it really spoke to my heart. After my first child was born with many health issues (clotting disorder, stroke, seizure, kidney damage, heart abnormality), I felt terrible every time someone said, “As long as it’s healthy!” during my second pregnancy. It knocked the wind out of me to hear someone say that so flippantly. People would look at me strangely when I would answer, “even if it’s not healthy, I still don’t care if it’s a boy or a girl.”

  3. Amen! Don’t our kids need us to be better, ALL OF THEM?
    After hearing this qualifier to my third pregnancy I had to ask, “what then?” Mind you this was BEFORE we knew that our third daughter had significant health issues. The conversation that followed still replays in my head 4 years and 2 more babies later.
    I think people say dumb things before they even realize their mouth is open.

  4. So glad I discovered this thanks to a link Mary Evelyn from “What Do You Do, Dear?” posted! My mother and I both have the same disability (it’s genetic), and we’ve both been been subjected to plenty of these conditional comments. This post does a great job of explaining why that needs to stop.

  5. My husband and I lost a son in 2011 a day after he was born to type II OI. When we were pregnant again, we would actually use the phrase “as long as it’s healthy” not because we would love him/her any less if there was something wrong, but because we were terrified of losing another child. So healthy is what we prayed for. Sometimes it depends on the situation. I totally understand where you are coming from though.

    • I’m so sorry for your loss, Erin 😦 I totally get what you mean. I would love another child fiercely if he or she turned out to have SB, but it’s still scary as hell.

  6. After a healthy pregnancy with ID twins, I had an emergency section after going into spontaneous labour at 37 weeks. Unexpectedly, my 6lb 8oz daughter was stillborn. My 6lb 10oz daughter was critical. They had unknowingly developed Twin Anaemia Polycythemia Sequence – a form of Twin To Twin Transfusion Syndrome. My stillborn had died just a few hours prior delivery from congestive heart failure according to her autopsy. My survivor suffered extensive brain damage caused by hypoxic ischemic encephalopathy. She wasn’t expected to survive. She turned 18 years old yesterday. She’s life limited. She has spastic quadriplegic CP & a trolley load of mult complex disabilities. Her cognitive & physical abilities are akin to a 0-3 month old baby. But you know what? She’s just the happiest most amazing person I know! I am truly privileged to be her mum 🙂 x

  7. People used to ask me what I wanted with each pregnancy and I answered honestly, “A boy.” When I went to ultrasounds, I always made it clear that I didn’t want any medical issues or problems disclosed because it wouldn’t change my decision to proceed with the pregnancy. I worried more about having a girl (I CAN’T EVEN BRAID FRICKIN’ HAIR!) than I did about having a baby with health issues. All babies are magic. Even the girl ones. 😉

  8. I adore your passionate writing, Sarah. I never did the early tests that were offered for Down Syndrome testing and what not when I was pregnant (back in the day). The doctors were always surprised when I’d reply that it didn’t matter. I got pregnant on purpose each time knowing that the outcome isn’t always roses and sunshine. I think that parents of special needs children have a really valuable voice in the cyber world: they can present the idea of how special needs doesn’t mean “the end of the world.”

  9. I totally see where you’re coming from, but for me it boils down to two things
    (like Erin above) 1) when I think of health I don’t mean free of all or any bodily problems (like SB or Down’s or any other variety of conditions and issues), but that what ever body they are given – whether it’s perfectly functioning in the eyes of society or not it is as healthy as it can be and 2) though I guess this might not be fair to tack on, but it’s relavent in my situation – I still ask for a healthy baby because I’ve lost two to “chromosomal” problems I had no control over. Any type of health is better than that. It’s actually something my miscarriages taught me – I’m a lot less afraid of all of those issues if it only means I get to keep another child on earth for a little while longer.

    I do think society puts way too muh emphasis on “perfect health” though, but I think what you feel like asking God for does depend on your own experience.

  10. Wow. A swift death? Maybe you need a little education too… Most people I have met who have been given the same news I have, have been understanding of each other whatever path they choose. You are right, I love my child whether healthy or not, alive or not. I always believed that I would have my baby no matter what physical or mental impairment they may have. With my history and my general stance on life, I felt blessed to even be pregnant.

    However I made the decision to terminate when my baby boy was diagnosed with severe spina bifida and hydrocephalus. I did not make this decision lightly. My husband had left me weeks before so he was my only chance to give my other son a sibling. Icould have kept him for my own selfish reasons. He was a very much wanted baby. It was a horrible heartbreaking decision that I took weeks to come to after extensive research and scans. My friend who has mild sb gave me an insight into what his teenage and adult life might be like. It was not a swift decision. Ultimately I did not want him to be in pain but a great many factors were involved.

    I don’t know if I made the right decision but nothing about the process was quick and thoughtless. I did not choose this because he was unhealthy. Had he been paralysed or something that was pain free or meant a couple of operations and he would feel better then that would be different. Operation after operation and a great deal of pain, slowly deteriorating? I’ve watched my cousin go through an early diagnosis of ms in his teens. It’s not what I would choose to bestow on someone I love. However, I do not judge those who wish to bring their children into the world knowing they will suffer. Many go on to do wonderful things and lead happy lives. It’s a horrible decision that nobody should have to face and I feel mothers should support each other whatever their decision. There are a lot of misconceptions it seems.

    I went through labour. I gave birth to my son. It was not a swift death. Please do not belittle his precious life and my enormous love for him with your words.

    • I was more referring to a swift decision on the doctor’s part, since they are the ones counseling abortion and are so quick to refer one. My intent was not to belittle your decision, however much i disagree with it. I’m so very sorry for your loss.

    • I will say, though, that SB is completely different from MS. You’re not “slowly deteriorating” and in constant agony with SB. It seems like you’re equating “having SB” with “endless suffering”. Lots of misconceptions there.

      • No. I was comparing two conditions where the body does not function how a person would like (Eg the inability to gain an erection). I know a great deal about spina bifida and ms as my friend has one and my cousin the other. Theyare both limiting conditions is what I am saying. My friend who has sb (closed) has deteriorates greatly in the last twenty years. She now has to use crutches to walk where she didn’t before. She is in constant pain. The numbness in her feet has now spread to her knees which has resulted in several injuries. The number of kidney infections that have her in hospital is ever increasing. Her immune system is lowered. She is tired and doesn’t have the energy she once had. She’ll be forty this year. She has achieved lots in her life but she wouldn’t have chosen this for herself, particularly her teenage years. I’m not judging you for your decision. I just think mothers have enough to deal with without other mothers judging them. I wasn’t given ‘options’. My doctor just explained the facts. I went away determined to carry on. It was only when I looked into what life actually could be like foe him that I made that decision. I love with the guilt and heartache every day. I miss him and I long for him. But I think the guilt and heartache I would have had for him had I brought him into the world alive would be doubled by watching him helplessly suffer. I don’t know.

      • And my boss’s nephew died at the age of six having had fourteen shunt operations in his little life. I didn’t want to get into this with you. We all make different decisions, I just think people should be aware of their flippant remarks such as ‘swift death’ or indeed ‘as long as it’s healthy’ as until you are in somebody’s position, with their set of circumstances, you have no right to judge. Perhaps if I was in your position with your set of circumstances and knowledge and beliefs then I would have chosen differently. You don’t know me or what I’ve been or am going through. Just please in future choose your words more carefully.

      • For sure did not mean to judge you, Jenni. I know that is a super shitty, tough, permanent decision. I don’t think anyone really takes that decision lightly, and I didn’t mean to imply that you did.

        I think one problem I have with doctors counseling termination is that they really can’t just give you straight “facts”. Most of it (from what I have heard other moms tell me, and from my own experience) is conjecture. The baby MAY be totally paralyzed, with no bladder function — or he may not be. I really think they tend to emphasize the bad outcome, since they can be sued for “wrongful birth” if the outcome turns out to be worse than expected. I really don’t think there’s any way that we can know for sure whether someone will suffer. My opinion is that everyone is going to suffer, with SB or without, whether we like it or not.

        Anyway. I 100 percent don’t mean to judge you and my heart goes out to you. I’ve been in that position and it’s not enviable. Please e-mail me if you want to talk more about this privately. My family and I will be praying that you can let go of some of your guilt and heartache. We’re all just doing the best we can with what we’re given.

  11. “Is [health] the sole quality off of which we should determine the worth of our children? No.” very well said. Your articles are inspiring! may you be blessed and find joy in spite of any circumstance.

  12. Wow thank you , I know on the birth of my beautiful little girl who has Downs I had to comfort and reassure all my friends and family that his was not a shame etc . And it’s not , everyday is filled with laughter and joy, we have made some wonderful friends and learnt so much and have so much more love and understanding of others . I thank god for my special girl everyday even when she’s running off or sat on the floor and won’t get up haha. Yes some days can be hard and new medical issues turn up , but hey you just get on with it xxxx look forward to your life with your little one xxxx

  13. Ok, that’s great. Thank you for understanding even if you don’t agree.

    I think maybe things are a bit different where I am? My consultant wouldn’t comment on his quality of life etc, only told me that due to the severity of his lesion he would be paralysed from the waist down and would have loss of functions below this point. He could not tell me the effects of the hydrocephalus as it can change so much and everyone reacts differently go shunts and can be ‘pot luck’ as to whether they malfunction. He wouldn’t even give me a best or worst case scenario. He just went on to tell me what would happen at birth etc. Very matter of fact. (Which is probably why I came away positive). It was only speaking to people living with or who had children with the condition that I realised what life COULD be like for him. That’s the hardest bit -not knowing for definite. But not sure I could have faced putting him through the worst case scenario. (But I totally understand why others would want to under any circumstance and that’s up to them). Termination actually was only given a brief sentence.

    He wanted to fly me to another country to undergo prenatal surgery which would have improved his condition immensely. His back would have been closed and so he would not be in pain in my womb if his spinal cord was no longer exposed to the amniotic fluid. He would have a chance of some limb movement and a drastically reduced need for a shunt. Amazing. Except it carried risks to both him and me. The biggest being maternal death. Which I would have done in a heartbeat if it meant saving him. But I could not risk leaving my other son. Especially given my marital state. So if I did bring him into the world I would always know that his life could have been less painful, he could have done far more, if I had risked leaving my sons without a mother and had the surgery.

    I’m not sure I agree with you that we all suffer -I certainly don’t suffer the daily physical pain that my friend does…

    I think my heart will always ache and the guilt will always be there (how could I not feel guilty ending the life of my son before he had a chance to live it?) That’s ok. I took on that lifetime of pain so that he didn’t have to. That’s what mothers do. Whatever we choose we choose to do so out of love for our children.

    I wish you and your family a long and happy future and I hope that maybe you will just take a moment to think before you make flippant sweeping statements (especially when writing a post about others who do just that ;-))

  14. This did get me thinking and I totally agree, you get what you get and you love them anyway and do your best! Children are a blessing, in any form…. “We need to get over the idea that a handicapped baby is better off dead. ” At any rate ‘normalcy’ can change at any time.

  15. Thank you for sharing this. That comment has always bothered me too because I wasn’t born healthy. When I was born my parents were told I had failure to thrive and would die. My mom would not accept that diagnosis and searched for a more accurate diagnosis. She found one, and a surgeon willing to operate.

    That statement has always haunted me. “As long as it’s heathy?” Did my parents say that before I was born?

    I asked my parents when I was an adult, if they were happy they had such a sick baby, or did they wish they had a another healthy baby. Both of them looked at me with shock and said I was worth every moment of crying, projectile vomiting, sleepless nights, and fighting for my live.

    I was so realized to hear that.

  16. Pingback: As long as it’s healthy. But what if it’s not? | A Beautiful Hurricane

  17. I certainly understand where you are coming from, but I am wondering if some people are just trying to escape the gender preference hell of their families and land on something most of those ridiculous people can agree on. I am looking down the barrel of secondary fertility at age 41 and I don’t care if he or she has medical issues or not, as long as he or she IS and continues to be.

  18. wow, this is REALLY well written and REALLY great to read. Our little girl was born healthy but then had a stroke at 3 months old. So yes, as long as it’s healthy is great, but people don’t say for a long life of health. You never know what could happen. Thank you as always for your insightful posts.

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