For those of you contemplating prenatal screenings that aim to detect birth defects, and specifically Down syndrome, I wanted to share something I wrote on my blog not long ago, which was also published on a disability site. Please know it's not a judgment, it's just another perspective to consider:
What It's Like
A little over three years ago, my sixth baby was born into loving hands, a planned home birth. I had, of course, spent the previous nine months imagining what this newest member of our family was going to be like, and dreaming the dreams for him that mothers tend to dream for their babies. Within the first day after his birth, it became clear that something was wrong, and after a frantic drive to the ER, our tiny newborn was admitted to the NICU where he would undergo major surgery at a day and a half old to correct the intestinal atresia he was born with. It was while Finn was in the NICU that we learned that he has Down syndrome.
Suddenly it felt as if all the dreams I had dreamed for him were shattered. I was afraid and angry – what did this mean? What would it mean for our family? What did I do to deserve this? How bad was it going to be? I was overcome by a grief so deep, it shook me to my core. There wasn’t a moment I didn’t love my new baby, and I found myself feeling a fierce protectiveness over him – but I felt lost and completely ill-equipped to be one of those mothers – a mother of a child with special needs. I was just a regular person, often frazzled and short on patience with my “typical” kids – certainly not the special kind of parent that everyone was suddenly assuring me I must be to have been given this special child.
I’ve traveled quite a long way since those early months of grief and fear and sorrow. Finn has grown into a mischievous toddler who continues to surprise me all the time. I’ve watched my other kids grow around Finn into sensitive, compassionate children who are accepting of people with all kinds of differences, from all walks of life.
As for me, I've made my peace with my son having Down syndrome, with his being different. I adore every inch of him, his body, his heart, and his mind, and I wouldn't change him if I could.
It's changed me, having Finn. Although I am not a believer in some grand, divine plan, I do believe that being Finn’s mother has enlightened me in ways I never really thought about before. There has been a great deal of introspection, reflection, and reevaluation of what it is I value. What constitutes a happy, full life? Are happiness and success naturally borne out of intelligence and ability to achieve? What are the criteria for a life worth living?
I have a sense of appreciation and perspective that I never had before. I am able to see and accept my fellow human beings with a more open heart and a broader mind; it's made my heart more tender towards those who are different, and harder towards those who are cruel or callous or rejecting of those who are different. It's made me more aware that we all have our trials, and that I and my family are incredibly fortunate and have a trillion things to be grateful for, Finn being one of those.
Sometimes the fear is still there, but I experience moments of fear concerning each of my children when I try to guess at what the future might hold. Life doesn’t offer guarantees to anyone. I don't know what Finn will be capable of, but I have very high hopes for him. Those dreams I had for him that were shattered? They weren't really shattered at all. It just took me a while to figure out that his life is not about my dreams, it's about his dreams, and only he can decide what those dreams are. Only he will be able to show me how his life is going to play out.
What I want people to know most is that this is not a consolation prize. This is not our family just making the best of a sad situation. We do not exist under a cloud of sorrow, and we do not dwell on the fact that our son has Down syndrome. Finn just is who he is, and we're pretty much like any other family. This is just life; it’s rich and full, and it's pretty great.
- October 2011
I am 44 years old and now find myself unexpectedly pregnant with my seventh child. I will not be undergoing any prenatal screenings, with the exception of an ultrasound to rule out any obvious anomalies that would preclude a safe home birth. The reason I'm not doing any prenatal screenings is because there is no test or screening that can tell me if my child will always be healthy, or happy, or successful - or anything. Life is a crap shoot.
I agree...you never know what can happen at ANY point in a child's life there are millions of things from cancer to autism to adhd to mental illness and anything and everything in between. For me, I need a Heads up. I will not do any tests that could harm the baby...nothing that is invasive, but for possibly reassurance or for a heads up of what the situation might be especially when its painless and quick and you get to see baby again (bonus)...I kind of needed to do it. Its weird thought...because up until #7 I NEVER did the tests but for the last 2...in my heart I just needed to. Anyways, thanks for sharing. Its very well written.
Very beautifuly written! Thanks for sharing with us
Wife to Jason
Brodie(9)~Deacon(8 )~Truman(8 )~Sawyer(5)~Elliot(3)~Finn 3/9/12
I love it. Beautifully written and so true. It is a crapshoot, in all its glory.
Rachel, momma to 4
dd 9, ds 7, twin boys Dec 09
I nursed my twins for 2years and 2 weeks! A little sad to be all done now.
I love the way you put everything. So beautiful, true and heartfelt. I love what you say about the other children developing compassion because of Finn. I have noticed my children doing the same thing. They have grown into a caring, supportive team. They all look out for one another and stand up for those smaller and weaker than they. It is a beautiful thing.
Deb ................. DH Norm
DS Caleb, 13 ...... DS Patrick, 12
DS Isaiah, 8 ......... DS Thomas, 7
DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
William, 14 weeks, 4/11/12
You've put into words exactly why I've always had issues with the prenatal screenings, and declined them with the last 3. Ultrasound would show the big issues, and there is nothing else I'd do about anything else anyway. For me, I always think "This could be the last baby, and I want to enjoy it." The stress of whatever is going to come, will happen no matter when I find out and I'd rather deal with it when I need it, and not a moment sooner.
Its an interesting question though...can you mentally prepare yourself and go through the "grieving" process before baby is born...or no matter what...does it have to happen once you hold your baby and you know for sure the situation? I guess my thoughts have been that if I can go through the sadness and acceptance before baby is here, then I could just be enjoying the moments with the new baby. I dont know if anyone reads Kelle Hamptons blogs...she has a daughter with ds. She blogs her family life and beautifully spoke of her daughter being born and her complete shock and the pain and sorrow she went through immediately following Nella's birth. It quickly went away and was replaced with love and acceptance. But I guess my question is...can you go through the pain and sorrow while the baby is still inside? Or no matter what is it going to come when baby is in your arms? Maybe that is a question only you as a mom can answer. I would just wish I could be ready to just be over the sadness already once I had the baby in my arms. I dont know if this post makes any sense...ive been up since 4 am and I cant sleep SOrry if it doesnt!
Although for me, I'd always rather know beforehand. Not because I'd do anything differently, infact I probably wouldn't do further tests/investigations, just because;
1/. I'm nosey
2/. I'm impatient
3/. I'd rather prepare myself as best I could for the things that may come
4/. I love ultrasounds!
Selfish? Probably... But I guess if we were all the same, life wouldn't be so interesting!
I have issues on and off with depression, so for me to be able to deal with "bad" news before baby arrives would always be better. I don't think I'd handle the news well once baby was there and in my arms. I don't know why, I guess I just need/like as much of a heads up as I can possibly get so I can work through MY issues and best prepare to work through other issues that may arise.
I usually decline any extra testing , there is always such a high chance of " something being wrong" or some tests having false positives... it adds so much stress.
Although I know that prenatal testing could help save lives in case of congenital heart problems, but those are usually found on ultrasounds.
Thanks for sharing that. It really does help to hear that perspective. DH and I have opted for the screenings, but I'm not sure what we'd do if we got anything other than the amazingly low odds we had with our kids so far.
big boy 12.8.07 @ 39+2 7lbs 8oz, 20.5" BFed for 13 months
middle boy 8.12.09 @ 39+4 7lbs 9oz, 21" BFed for 13.5 months
little boy 4.26.11 @ 38+4 6lbs 14oz, 19.5" BFed until 26mo and again 30-37mo
baby boy 10.25.13 @ 41+0 8lbs 15oz, 21.5"
8.16.12 & 12.16.12
surprise pregnancy ended 1.9.15