IVF twins......one with Downs Syndrome.

Mary - posted on 03/13/2010

Celia, if I misinterpreted your post, I apologize in advance.



I take issue with the statement "Yes it's her fault her baby has Down's".

No, It's not her "fault". Does the RISK go up after 35, yes...but it's not a given. Are you implying that no one over the age of 35 should bear children? I was 38 when my daughter was born...she does not have Down's. I have also delivered many a Down's baby to a mother in her 20's...is it somehow less their "fault" just because they didn't fall into the higher risk group?



By that line of thinking, pretty much NONE of us should reproduce. All of us are genetically pre-disposed to something...heart disease, hypertension, cancer, hypothyroidism. If your child develops breast cancer in her 40's, is it your "fault" for having her, knowing that your family has a history of it? Of course not. Every time we get pregnant, we ALL take a gamble with having a less-than-perfect child. Some of us get luckier than others, and some of us are faced with a few more challenges, be it Down's, autism, severe allergies or just plain old hereditary stupidity. No one is at fault for how the sperm and egg develop after they meet...we cannot consciously CHOOSE to have a baby with or without Down's...no matter what our age is.



I think all parents feel a degree of guilt, blame, or responsibility when their child is born with ANY type of deformity or disability. It's usually not rational, but rather an emotional response...and is just human nature. Feeling guilt, and actually BEING guilty, are two entirely different things. She didn't CAUSE her daughter to have Down's, any more than she caused her son to be normal.

Celia - posted on 03/13/2010

This is a silly question...
Yes it's her fault her baby has downs... after 35 the chance of having a child with downs goes way up.
Is it a problem...? no! My goodness, with ALL the many medical issues a baby born to a woman her advanced maternal age she's feeling hard done by with downs? Downs syndrome is almost a non issue in England and Canada. There are many programs to help her child in school, to get a job and live on their own, I have known couples who both have downs Syndrome who get married and yes some have kids! Many are fantastic advocates for all people with developmental dissabilities... a good thing because many other syndromes are not as high functioning and can not advocate for themselves!
When you take the risk to have advanced pregnancies you take a risk. She gambled and came out lucky in my books.

Patricia - posted on 03/12/2010

I have had the pleasure of working with handicapped children of all nature....I personally found it to be a very uplifting experience at a young age. It has truly taught me so much about life itself....people say that having a handicapped child is challenging....I think that being a parent all the way around is challenging no matter if a child has a handicap or not. And as Jocelyn stated, most down syndrome children do and can function in society...it's society that has a hard time functioning with them. They are just as human as you and I. The children that I had the pleasure of working with, were sweet, funny, caring and loving.....just like any other child I know. The only difference was that these children saw the good in everybody.......having a child with a handicap to me, doesn't mean anything. If one of my children were in an accident, and had to lose an arm or two, I would not dispose of my child...he is still my child and my love would not change. Everyone stresses on a "PERFECT FAMILY" Really, is there such a thing?

Sharon - posted on 03/11/2010

We faced the possibility of a disabled child. It was never a reality so I didn't have to absorb it like she did.



We thought long & hard about it and decided we would not bring a less than whole child into this world. If they could have said - yes, they'll be functional, self supporting adults despite their handicap - yeah, we would have dealt with it.



DownSyndrome is tricky. Some kids have a very mild affectation. Some kids are just drool fountains and seem to have less intelligence than an ape. No one WANTS a child like that. Some people will accept it, but no one ASKS for a child to be born that way.



I didn't read the article. I'm just going on the "what would you do?" aspect.

Carolee - posted on 03/11/2010

She is being completely honest about what she felt when she got the news. I think most people (despite test results saying that there was a high probability) still believe that ALL babies that THEY have will, of course, be perfect. It's got to be devistating to find out there's something "not right" with a child.



Now, as for my own reaction... I believe I'd do better than she did. My cousin, who is 4 years younger than me, had Downs Syndrome. It's just something that I grew up around. I know that there's a chance that any children I have could have it. I also know that there's a LOT worse that could happen. One of my older cousins had a child that died at birth because his stomache never closed and his leg developed up his back and his brain hadn't really developed properly.



There are innumerable things that can go wrong with a pregnancy and life in general. Usually, there's a bright side. My cousin with Downs was one of the kindest people on earth (she's gotten cranky in her "old age", which is kinda funny when you've known her for so long). It also depends on how extreme her Downs will turn out to be. There are a lot of "functioning Downs" people in the world. And just because someone has a disability does not mean that they won't ever find love or work or be able to live on their own. Just look at all the mothers who's kids have no desire to work or move out that are able! Life isn't fair, and you're "stuck" with your kids until the day you die, whether they move out of the house or not (a fact that I rather like, but I'm a little odd).

Jocelyn - posted on 03/11/2010

Oh wow I can't even imagine being in that type of circumstance. I think she is being perfectly honest. Everyone dreams of having the perfect family, and then you find out that something is wrong, that's gotta be a horrible crushing blow. I don't fault her for blaming herself; if it wasn't for her being older, have IVF, (etc etc) then she wouldn't have brought another DS child into the world. Yes her life probably would be easier. I think that she is scared. But I also think that she is expecting the absolute worse (and let's face it, who wouldn't). But there are plenty of high-functioning DS children who DO go on to lead normal lives, live on their own, get married, have their own children. Being a first time mom was hard enough for me having a "normal" full term baby. She's got two babies and one is special. My heart goes out to her.

Rosie - posted on 03/11/2010

i feel she is being completely honest, and i'm pretty sure that i would be feeling everything that she stated. i find it refreshing to know that i'm not the only one that would feel that way. when i was pregnant with vincent, he had a 2 vessel cord instead of the normal 3 vessel cord. they told me that sometimes kids that have this situation, will have down syndrome. they told me that from his ultrasound and bloodwork that it didn't look like he had it, but they told me it was a slightly higher chance than normal that he would have it. i starting thinking all of these things as well, i even wondered if i should keep the pregnancy if i knew for sure that he had it. i completely understand this lady's feelings, and don't fault her for it at all.

Good Day! - posted on 03/11/2010

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Good Day! - posted on 03/11/2010

A friend of mine has a two year old daughter that was diagnosed with CAVC (Complete Atrioventricular Canal Defect) at birth and diagnosed with 2Q37 deletion syndrome about a month ago. 2Q37 is an extremely rare condition (90 cases worldwide) in which genetic material is deleted from chromosome 2. She's endured open heart surgery and countless therapies. This is what my friend wrote in her blog after being given the diagnoses. This is how I would hope to react.

How are we dealing with all this information you may ask. We are surprisingly great. As scary as a real diagnosis was, it was scarier to not know. We have also dealt with so many of the blows already…the feeding tube, the heart defect, the delays, the other diagnoses that we now know are not it…so this isn’t really anything new. It just gives us an answer for so many questions. We know that this was not a mistake. This is the way the Lord knitted her together. And while knitting away, he purposely removed that small thread from her 2nd chromosome. We will praise Him, because she is fearfully and wonderfully made! I am just so happy that she is ours. She is such a rare and special angel, and I feel so honored to be her mommy. My dreams are still as big for her as the day I found out I was pregnant. They may be a little different, but they are definitely no less grand! As far as what we will do next…I’m not really sure. We have been doing what we were supposed to do all along…we’ve seen all the right and wonderful doctors and have had her in therapy since she was 6 months old. Our plan is to keep loving her to pieces, and time will tell exactly what she is capable of. We also know that each small step is a big one, and will continue to rejoice with each new milestone.

Kelly - posted on 03/11/2010

I agree with you Dana. God only knows how I would react. I know that I would love my child no matter what, but I really hope that I wouldn't feel so negative towards my child in the beginning.... Having known Down's kids (and adults) I think a lot of people are just ignorant when it comes to the disability. Of course there are different levels, some are more severely affected than others. But the few that I have had the pleasure of knowing are some of the most loving and caring people I have ever met. When I am negative, it helps to sometimes look at things through my kids eyes. You know how even the most simple thing is absolutely amazing? Down's people are like that too. They can show you how to stop and smell the flowers. One of the comments on the article was a poem I have seen before, and I think it's beautiful.....



My face may be different but my feelings the same

I laugh and I cry. I take pride in my gains.

I was sent here among you to teach you to love,

As God in the Heavens looks down from above.

To Him I'm no different; His love knows no bounds

It's those here among you in cities and towns

That judge me by standards that man has imparted

But the family He's chosen will help me get started.

For I'm one of His children so special and few

That came here to learn the same lessons as you.

That love is acceptance; it must come from the heart.

We all have the same purpose though not the same start.

The Lord gave me life to live and embrace

And I'll do it as you do - just at my own pace.



One thing that does kind of shock me, is that these women are so negative. On one hand, I guess they are being true to their feelings, but on the other, their kids are going to grow up, and someday realize that their mothers at one point had such bad feelings about their very existance, or how they were born. ( I am thinking also of the thread about the woman that had the C-section that gave her PTSD....) I'm not saying they should not be true to their feelings, but is it good to have them published and kept for all eternity?

Dana - posted on 03/11/2010

Wow, that's really awful. I personally hope I would react better but, who knows. I would think she would have been more prepared given the possibilities and her age. Especially thinking she'd carry to full term with twins. I think it's another situation where you set yourself up for failure if you don't look at things realistically.



I'm glad she is dealing with it better and her husband just sounds wonderful. It seems like it would be reversed in most situations. Of course there being a 7 yr age difference, it would be looked at differently.

Mary - posted on 03/11/2010

Sheesh, that's a hard one.

She's had a lot thrown at her in a short amount of time. First, she finds out she's having twins (not unusual with IVF, but I guess no one is ever truly prepared for that). than, she's told there is a strong possibility that BOTH babies have Down's. Next, she finds out they have disconcordant growth, and she has to deliver VERY early. Two babies in the NICU...I can't imagine. THEN (as if they haven't been through enough) they confirm that the little girl does indeed have Down's. Regardless of your outlook on having a special needs child, I think anyone would have to concede that this couple has had A LOT of difficult things to deal with in a short span of time.



I do know that almost all parents who have a Down's baby have a period of grieving. Despite knowing that it is a possibility, accepting the reality of it is never easy. Her feelings of guilt (my eggs are old, it's my fault) are common amongst all mothers. And, despite loving that child, it is also very normal to worry about their future...especially the "what's going to happen to her when I am too old to look after her, or if I die". I am sure she also worries about the possibility of her son's life being drastically altered if he should have to care for her at a young age. This is a greater possibility because she is an older mother...and another reason she feels guilty, or like she failed her children before they were ever born. I'm sure that this guilt is all the more greater because she conceived with IVF...this wasn't just an "accident" of nature...this was nudging mother nature artificially. I'm guessing this makes her feel even more responsible for her children's health and and overall well being...they didn't just happen to her...she agressively pursued their mere existence. (I'm not saying she SHOULD feel more guilt, just that I understand why she does).



I'm also pretty sure that having twins makes life in general more challenging than a singleton. But having one one who is "normal" and one with Down's must only serve to highlight on a daily basis the deficits of her daughter in a way that would otherwise would not be quite so obvious. No question about it, life has thrown her one hell of a curve ball.



I'm touched by how positive and loving her partner appears to have been, and remains. And, while she does admit to some shockingly negative thoughts, I think they are more of a reflection of her own guilt about "causing" her daughter to have Down's...and concerns for the difficulties that both of her children may face in the future. Overall, she does appear to genuinely love her children...and it would be interesting to see an interview with her 5 years, from now, 10 years, and at the end of her life. Hopefully, she will say that a lot of her negativity was her letting her guilt, fear, and worry for her children just get the best of her.