The Down’s Spectrum, Ctd

The thread grows and grows:

A close relative of mine has a three-year-old girl with Down’s, and she is an angel. Whatever the spectrum is, she is on the high-functioning end. This year she started attending preschool, and the hope was to mainstream her eventually. All that is on hold now because she was just diagnosed with leukemia.

Seeing her family cope with this situation is quite difficult, but it is not uncommon. Even though this little girl was mentally high-functioning, she is more susceptible to physical problems because of her extra chromosome. Another reader mentioned a hole in the heart, which is another common health issue for Down’s kids. A quick Google search will show you just how many physical problems are more likely with Down’s. It’s daunting.

Some good news: prior to the ACA, Down’s was a pre-existing condition, subject to all the limitations that went along with that. Now my family is at least not worried about hitting a lifetime dollar limit on her care. (She is receiving excellent care and responding well to chemo.)

The thing about her Down’s is that it is tough, but it is manageable and a well-known, well-researched condition. Her family has immense support, and people truly do understand Down’s in a way they did not used to. This little girl requires far less care than, for example, my cousin who has hydrocephalus, among other things. He is 22 years old and over six feet tall, but he is cognitively two years old. He requires constant care and has no hope of ever functioning on a higher level. The mother of the girl with Down’s knew with a simple blood test that her fetus was at a higher risk for Down’s. My aunt did not know until after her son was born that he would be so disabled.

Because of my relationship with these two families, I do not understand choosing to terminate a pregnancy because of a blood test that says there is an extra chromosome in the fetus. That bit of information simply does not tell you much. Your child could have far more severe problems that don’t show up until well after birth. Getting pregnant at all is a huge risk and a commitment to another person for the rest of your and their life.

I am pro-choice, and I firmly believe the decision to end a pregnancy is too personal to be handled by the government or anyone but the person in that situation. I am not trying to pass judgment on someone who does choose to end a pregnancy because of the blood test; I just have trouble understanding it.

Another is on the same page:

I recently gave birth to my first child in November. I am part of a group of online mothers, and one mother delivered a premature baby girl who has Down Syndrome. She is an adorable baby and very lucky that she has such a caring mother. Her mother has recently become a very vocal advocate for banning abortion (in cases of Down’s) and even prenatal testing! I’ve kept my mouth shut, but it’s been hard. I do not know how someone, who is so intimately aware of the struggles that come from having a child with special needs, feels they can dictate other families decisions in this way. Then again, that’s the issue with the whole abortion debate. But special needs seems to be a special case, not only because of the suffering a child or adult with disabilities may endure, but because of the impact it will have on any other children or family members.

I should add that I have a sister-in-law with Down’s. She is at the higher end of the spectrum but could never live alone. She is very sweet and loving and caring. But she’s a child in a woman’s body. I’ve often asked my husband what would happen if her parent (my father-in-law and my husband’s step mother) passed away. Where would his sister go? He assures me that his step-mother has a large family who would care for her. But I really worry that there isn’t a plan. And where does that leave us?

Another:

Your reader who shared anecdotes about her 62-year-old cousin with Down syndrome is exactly why the PSA video you highlighted on World Down Syndrome Day is important and necessary. It’s important and necessary because it articulates a point of view that is often drowned out by messaging consistent with your reader’s mindset, i.e., your life will be horrible if you have a child with Down syndrome. It’s scary enough for parents who get a diagnosis of Down syndrome – pre or postnatal. Those parents will immediately seek out information, and often times the information they will find is overly pessimistic, horribly one-sided and often antiquated.

Hence, it is nice to see the other side of the story – the side that shows that while there will inevitably be challenges, your child will be more alike than different from your other children and will bring immense joy to your life. I know from experience that that is a dark and scary time and you naturally focus on the real or perceived negatives of your situation. I wish I had seen that video during those first few weeks for a brief respite from the doom and gloom. I have three sons, one of whom happens to have Down syndrome. I have a ton to be thankful for, both professionally and personally, but having and raising my son with Down syndrome is the best thing that has ever happened to me. I really could not care less if someone believes that is an overly optimistic viewpoint. It’s the truth.

Another reader sends another video, embedded above:

We found out our 21-year-old daughter Sophie had DS in our seventh month and just couldn’t go through with terminating the pregnancy.  When you see the video, you’ll know we made the right choice.

One more:

Reading this thread just about brought me to tears; it’s just so moving.  I’m so grateful for your site and the unparalleled reader feedback that makes it so special.