Readers discuss both the challenges and the joys of raising children with disabilities.
To the Editor:
Re “Our Prenatal Testing System Is Broken,” by Amy Julia Becker (Opinion guest essay, Feb. 2):
I read with interest the essay by Ms. Becker regarding her 16-year-old daughter, Penny, who has Down syndrome. I worked for many years at New Jersey’s Division of Developmental Disabilities, and I believe that it is important to add that some families are not as fortunate as Ms. Becker’s.
Many children born with Down syndrome do have mild or moderate intellectual and physical disabilities, as it appears Penny has. Even so, despite being able to use a cellphone, attend school and participate in extracurricular activities, most of these mildly or moderately affected children are unlikely to get jobs after graduation that can support them. That means they will need to live with the support of family or an agency placement such as a group home.
Nearly all of these agency placements have waiting lists, sometimes long ones, so families need to be prepared to provide supervision and care, perhaps into their golden years, until one becomes available.
And there is a range of Down syndrome disabilities. Unlike Penny, some children with Down syndrome have severe disabilities. Families of these children may need to provide all of the child’s self-help care, including bathing and toileting. Some in this more severely affected group will never speak.
A family embarking on the possible birth of a child with Down syndrome needs to be aware that there is a range of disability that includes possible full-time, hands-on care for many years.
Gayle Eklund
Upper Montclair, N.J.
To the Editor:
My beautiful daughter, Eden, was born with Down syndrome five years ago, and she is the love of my life. I decided to forgo genetic testing because I knew I did not want an abortion either way, and I am so grateful I didn’t know before she was born. To hold your baby in your arms and fall in love with her is very different than receiving a diagnosis while pregnant and being told by medical professionals all the risks and health issues your child may (or may not) have.
My daughter is healthy as a horse, and she lights up the world. She has a gift for connecting with others and touching people’s hearts everywhere we go.
It deeply saddens, angers and worries me how commonplace genetic testing is. I have heard countless stories from friends I have made in the Down syndrome community about being urged by doctors to abort.
The world needs more children like my daughter. Diversity should be celebrated, not weeded out. Thank you, Amy Julia Becker, for sharing your story. It warms my heart to know that I am not alone in my feelings and thoughts on this.
Tamasin Partridge
El Cerrito, Calif.
To the Editor:
Amy Julia Becker’s essay argues that if medicine would focus on positive medical outcomes and societal support for a child with disabilities, there would be fewer abortions.
My abortion came with information and access to some of the best medical care and support possible, and I still knew it was the right decision. I did not want my baby (with a very severe congenital diaphragmatic hernia) to suffer. I had an abortion because I was informed of the diagnosis, the implications of the diagnosis and my options.
Like so many who face a decision about abortion, social support and acceptance were irrelevant for my decision. What I needed and was provided with was comprehensive medical care — nothing more, and thank goodness, nothing less.
Alexis Miller
Bethesda, Md.
To the Editor:
As high-risk obstetricians, we counsel families facing unexpected prenatal testing results. All families should receive “respectful, neutral counseling when discussing options of continuing or terminating the pregnancy.” Anything less is unethical.
Some nuance is missing from this essay. Down syndrome is only one of many conditions that can be diagnosed prenatally, and these conditions vary markedly. Some are amenable to prenatal or postnatal treatment, some may be non-life-threatening but present serious and lifelong implications (such as Down syndrome), and others may result in death shortly after birth.
The author made the decision that was right for her and deserves support. Some families decline genetic screening. Some choose screening to prepare in case their child has special needs. Some families choose to end a pregnancy after an unexpected result; some do not. All these decisions deserve our respect.
We can value the lives of differently abled individuals and respect the right of families to make their own best decisions.
Alexandra G. Eller
Cara C. Heuser
Salt Lake City
To the Editor:
I want to thank you for publishing this article. As a parent of a 15-year-old daughter with Down syndrome, I couldn’t agree more with Amy Julia Becker’s view on prenatal testing. I had an amniocentesis test to confirm the diagnosis at 20 weeks and was very scared. I was determined to carry out the pregnancy despite my doctor’s options being heavily weighed toward termination, and I couldn’t be more thankful for that choice!
The more we can educate parents on all the positive experiences that come from having a child with a disability, the better off our world will be.
Gretchen White
Buffalo
To the Editor:
It’s not the prenatal testing system that is broken, but our culture and society. As the mother of a child with multiple disabilities, Down syndrome being one of them, I can attest to my son’s good character and loving nature. My family is one of the lucky ones, yet other families fracture under the added challenges of a child with a complicated diagnosis.
At my son’s school, special education teachers are not paid the same as their general education counterparts, and there are many open paraprofessional positions, because of low pay and no benefits. In addition, not every family has extended family members nearby who are willing and able to pitch in.
When families can better afford to care for children with disabilities and have enough support, and teachers and caregivers are paid well, then it will be easier for me to tell a family facing a prenatal anomaly, “You’ve got this.”
Leslie Nuss
Valparaiso, Ind.
To the Editor:
Amy Julia Becker has raised a very important point. In selecting to abort abnormal fetuses (which in some cases are wrongly identified, which parents find out after their perfectly healthy child is born), we are creating a platform for eugenics. Most people would recoil at such a thought, but that is exactly what is going on here.
If the abnormalities would cause suffering for the newborn baby with no chance for survival or would endanger the life of the mother, then yes, sadly, the pregnancy should be terminated.
I hope the medical establishment takes note that providers sorely need more training to address this issue. With many women having babies at later ages, this scenario will become more commonplace, and we, as a society, need to take a hard look at how we view “normal” if we truly want to be inclusive.
Pamela Williams
Barnstead, N.H.
The writer is a retired certified speech-language pathologist.
To the Editor:
The most important words in Amy Julia Becker’s piece: “I wish more of them knew that countless families with children with Down syndrome have lives marked by love and joy, lives that have been changed for the better.”
Our 8-year-old grandson, Miles, is a shining example. Like so many other children, Miles is an avid reader and loves to tell jokes. Despite his limitations, he participates. He is learning to skateboard and is an avid swimmer, and instead of being on his school basketball team, he is the coach’s assistant.
Miles is a happy, loving child. He brings a smile to the faces of everyone he comes in contact with. When I tell someone we have a grandson with Down syndrome, if they say, “That’s too bad,” I immediately correct them by saying, “Miles is a blessing!” Our entire family is enriched in so many ways by the gift we have received.
Frank Gunsberg
Great Barrington, Mass.
