Trisomy 13

Thanks to Chloe for sending me this piece from the Guardian. The author, Victoria Lambert, writes powerfully about her regret at having an abortion at 13 weeks when she found out her baby had chromosomal abnormalities, in this case Patau's syndrome, aka Trisomy 13. Read the article here. More on Patau's syndrome here.

Victoria Lambert's story makes me think of how far we've come since pre-internet days when it comes to subjects like these. Twenty years ago, she could perhaps have put the whole question of kids with T13 out of her mind, or tried to. She'd have been highly unlikely to come across any stories about it in the mainstream press, or to cross paths with parents in a similar boat. Now, with two clicks of a mouse, she can torture herself to her heart's content by reading parents' stories and looking at children's pictures. Wonderful if you're a parent in need of support, of course. But devastating, surely, if you are a person eaten up with regret.

Comments

[Cara]

But - as the site linked to above by Glenda states, the vast majority of people with trisomy 13 don't reach their 1st birthday. Yes, a minority may only be mildly affected, but there is no way of knowing that before birth.

It's somewhat unfair to present an unrealistic picture. Victoria, who wrote the Guardian article, seemed to have wildly unrealistic visions. It's almost denial. Of course a woman with a much-wanted pregnancy doesn't want to think her child will be impaired. No parent-to-be wants to forget the dreams of watching their child play, take part in sports and hobbies, graduate, get their first job, get married, and so on...and so it's natural that they convince themselves that *their* child will be the one to be relatively unaffected. I think this is why the medical profession may present what seems to be an overly gloomy picture.

I did find Victoria's piece verging on anti-choice, when she talks about how it wouldn't have been a big deal to sacrifice a couple of years of her life to 'nurse' her child. It implies that a woman who doesn't do so is selfish.

I don't think any woman's choice, whether to continue with pregnancy or not, should be judged.

[Heather Wilkinson]

This article made me cry.Victoria you are very brave to have written such a moving article which will touch a raw nerve with many women who perhaps have not felt able to speak out.I believe you truly loved your little son otherwise you would not have had these feelings.There is no easy answer and if your son had lived then there might have been other devastating things to cope with.You did not make this decision without any regrets,ie not coolly and clinically.Therefore do not beat yourself up because the fact you are still so upset shows you genuinely DID care.Thinking of you and THANK YOU

[Barb]

The internet provides us with the ability to find out more about conditions that they doctors may wish. This is especially true regarding quality of life for children with disabilities. Doctors paint a gloomy picture but the family who does research may find otherwise.

My daughter Annie was born with Trisomy 13. She was mildly afflicted because she did not have the common brain or heart defects of the condition. It didn't matter. She was labeled and her fate was determined by "internal" hospital policies before her birth.

We do not know how Annie died at the ago of 80 days, within 24 hours arrival at the prestigious children's hospital. We do know that a DNR was ordered without consent, two unauthorized, lethal withdrawals of narcotics were made, and the final medication administration report is inexplicably missing.

www.anniefarlow.com

The fact that a prominent University invited me to tell my story in a public lecture provides credibility. But it doesn't matter. Nothing has changed. We wonder how things got horrifically out of hand in Nazi Germany. In Canada, we are headed back there.

[GoneBackSouth]

Yeah, the information age is a wonderful thing ... but we do have an awful lot more to deal with now than we did in the old pre-internet days. I remember when the only way to find things out was to trawl through the library - and even then you usually didn't find what you were looking for.

[Glenda]

India,

I have a 22-year-old daughter with Trisomy 13 in the form of a translocation (13q/15q). Rebecca was not diagnosed prenatally nor in infancy, though she was born with many anomalies common to babies with chromosomal differences and at a huge, big-city hospital. What this many year lack of a diagnosis meant for Rebecca was that she received all tests, surgeries, treatments, and therapies considered necessary to address her anomalies without a hospital or doctor deciding that "her condition did not warrant aggressive treatment." I homeschooled Rebecca for many years, and we paid privately for some therapeutic services. Today, Rebecca reads, writes, and calculates. She still has some gastrointestinal issues and mild to moderate scoliosis, but she participates with great enjoyment in church activities, special needs sports activities, and a social and continuing education group for higher-functioning young adults with special needs. She is a joy to be around. Do I know that not all individuals with Trisomy 13 live long-term, or even to birth? Absolutely, but I also know that there are stories for 80+ living children and adults on the www.livingwithtrisomy13.org website. Almost all of their parents were given little to no hope, one family cruelly denied the chance to complete the prebirth hospital tour. They were told they did not need to see the newborn nursery, because their child would never leave the NICU. Today, she is working at grade level in her second grade classroom and takes ballet and jazz. Of the families whose children appear on the Treasured Memories album, I have not heard a one who expressed regret for carrying to term, when possible. Some got to spend months or years with their child, some only minutes or hours - but a gift, nonetheless. We even have a few Moms who have written regrets letters similar to the one you noted by Ms. Lambert. One of those Moms is a nurse and has spent so much time helping the other parents on the site negotiate the maze of special needs concerns. She defines terms, explains available treatments, and extends so many kindnesses to families trying to find their way along a new, and sometimes unexpected, path. She has chosen not to torture herself with our kids but to touch them. Hiding the truth helps no one.