crystal ball
April 30, 2007 / 10:05 PM
We’re living a very good news- bad news sort of life lately. The pendulum has been swinging so widely from side to side it has been a little hard to know how to feel but in my heart of hearts, I know Josie will be OK. I just do.
For the most part, I’ve come to terms with our hard genetics visit. Today we had a visit with Josie’s pediatrician to re-check her ears and catch him up on the latest developments. The good news is that after three months of antibiotics her ears are finally better. I told her doctor how hard the appointment had been, and that the geneticist had told Tim and I not to have any children until we had a good answer to explain her condition. He very correctly pointed out that if Josie does have a genetic muscle or connective tissue disorder there is no way to predict how future children will be affected.
I guess I was too busy being hurt to think about it from a more practical angle. Josie has weak lower extremities, but in theory, a future baby could have facial deformities, a heart defect or deafness. Most conditions that Josie are being evaluated for are not detectable with prenatal testing because they do not cause conditions that lead to a shorter life span or mental retardation. It makes sense that current research money and effort is being focused on developing testing for diseases that need immediate treatment when a baby is born.
This brings us to our current dilemma. How much disability are we willing to inflict on a hypothetical child? The hypothetical part is key here of course. If I were told an unborn baby of mine had a severe birth defect I would be grateful for the forewarning to be prepared emotionally and medically, so that is not the question.
What if we learn the combination of our genetic code has a good chance of producing a child with a severe cleft palate? This theoretical child could be as smart and funny and full of joy as the J Bear, and once conceived I would of course never consider terminating a baby that an ultrasound showed had a facial deformity. But, how would I feel afterwards when Theoretical Baby had to go through a series of operations, and had recurrent ear infections? How would I feel when she came home from school crying because kids picked on her because she looked different? How would it she feel about a mother who knew she had faulty genes and inflicted them on her child anyway?
See the problem? There’s no question about loving your already born child. And, there is a 3-5% chance of having a baby with congenital birth defects even with "normal" DNA. But, what if you have a 50% chance of having a baby who will be smart and healthy, but will look different. Is it selfish to have that baby? It is shallow to even worry about it?
I don’t know.
Posted by: Suzie
File under: josie girl
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Comments
There's also a very good chance there would be nothing wrong with the baby. You two seem to be such incredible parents - whether the baby is born with a defect or not -what more could they ask for? I think, if you two love each other and want to build your family for the right reasons (not to just give J Bear a sibling, etc...) but truly because you want to create another human being that is half of each of you, then go for it.
Maybe more to the point is whether or not you can handle it physically and emotionally, with everything on your plate?
Posted by Tracy
April 30, 2007 10:48 PM
Oh Suzie.
Firstly, you are trying to decipher way too many "what ifs"; and I believe this is because you know so much information.
Our lives are full of "what ifs". You know that many, in fact most of our "what ifs" do not come to pass; and "if" they do, God always gives us the where with all to handle the situation if we allow it.
Take some deep breaths. Relax. Believe in your higher power's ability to take care of you and your lovely family. All will be well for you. Hold to this truth. This is faith.
Posted by Trace
May 1, 2007 01:07 AM
Obviously we don't know what genetic defects will crop up, any of us, but as long as the life lived can still be joyous, happy, and filled with french-fry dancing (as Josie's is), it's a good life. You are already giving that future child the very best gift: wonderful, loving parents and a great family.
There was a little girl like Josie in my daycare when I worked in childcare, and everyone adored her. All the little kids and even the bigger kids doted on her. She is an amazing ray of sunshine, just like Josie.
Have faith in yourself.
Posted by thejunebug
May 1, 2007 01:34 AM
Yikes, let me know when/if you get to the bottom of those questions.
Seriously, that's the sort of stuff that a lot of parents are wrestling with (though few will admit it as openly as you have). Especially in this age where women are having their first and second kids much later in life than was fashionable in previous generations, the '3-5%' statistic you quoted starts to creep up significantly. Add to that all the prenatal testing that is now available that gives parents information/choices that many would rather not have (partly due to the rates of false positives)... well, it isn't easy being a parent (potential or otherwise) these days.
Sure there will always be people who will point at someone like Steven Hawkings and lecture you about "would you deny the world such a brilliant mind just because your baby won't be 'perfect'?" But I imagine not many of the people who would make such an argument have had to raise a disfigured or disabled child.
In short there is no right answer (at least IMHO), and in my book you have already passed the 'good parent' test for weighing all the possibilities.
Posted by treppenwitz
May 1, 2007 03:39 AM
Because Huntington's runs in my family, I found Arlo Guthrie's decision very comforting -- he basically decided that he was going to live his life the way he wanted, disease be damned. I'm sure the geneticist would say that was selfish, and maybe it is. I don't know what my status is, so I don't know if my kids are at risk. But heart disease runs rampant in my family, and cancer runs rampant in Spouse's family, and depression, and famine resistance (lol) -- all sorts of stuff to make a life miserable. At this point, I can't imagine a day when I would look at my child and think, "I'm sorry I brought you here." I can see me thinking, "I'm sorry you're suffering, and I'm sorry it was my genes that caused that . . . but I'm grateful for your existence Every Single Day."
I don't know. Maybe it is selfish. I decided to have kids anyway, and I think I want to do it again. And try as I might, I just can't imagine a day when I wished I hadn't had them.
Posted by Meira
May 1, 2007 01:18 PM
In this day it's amazing anyone chooses to have children because there is just too much technology out there to scare us silly.
Make the choice that is within your heart. You and Tim have a lot of love and if your heart tells you more children need that love then go for it...if it tells you Josie is enough then that's perfect as well.
Posted by daisy
May 1, 2007 04:52 PM
I wish there was something I could say. I agree with Daisy though. You have to do what's right in your heart. I mean, what if you listened to the doctor and he was wrong? And you missed out on having another child as awesome as Josie? Because seriously, on a bad day, looking at her pictures brightens MY day. I can only imagine the feel good factor is that much higher in person.
Posted by statia
May 1, 2007 07:50 PM
Been a long time reader of your blog as your baby has been quite endearing over the past couple of years.
I have a genetic condition. Hereditary Multiple Exotoses (if you want to look it up). And I inherited it from my mother, gotta love those autosomal dominant conditions. I've had 10 surgeries in my life, and will most likely have at least another 3-4 in the next 5-10 years. I have a shorted finger and a shorted radius, and a wrist that doesn't turn completely. I have knocked knees and a shoulder, that because of 4 surgeries on it, doesn't work so good and never will (I'm just gratefully that I have full range of motion). And I have it lucky. Others with this condition have tumors that prevent them from walking, have distorted every limb.
I have never, ever blamed my mother for passing this on. I'm not married, but I hope to be one day and yes, have children. I hope my husband will be willing to take the risk that his kids might not be physically perfect, but right now, that's the plan. I look at all of the benefits a child of mine would have... a loving home, unconditional love, no drug or smoking or alcohol. Our kids are all going to have challenges in their lives. I'll at least know what one of them might be.
Posted by Julia
May 2, 2007 01:27 AM
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