Every quarter, the Down Syndrome Association of the Philippines hosts an Early Intervention Seminar for new (and some veteran) parents of children with Down syndrome. Dan and I went on Nov. 11 and we were welcomed, congratulated, listened to and were inspired by the families of DSAPI. We made friends and we found a new community.
We try to make time for the EIS when we can because it’s our of way of paying the good deed forward. We were blessed by the community and it is our turn to reach and welcome the new members. It is our turn to listen to them, to celebrate their children and for the new parents, we always, ALWAYS tell them “CONGRATULATIONS”
That word is so important because when your child is born with Down syndrome you don’t often get that greeting.
When we were facilitating a group of parents whose kids are 8 months to 1 year old, I can’t help but be floored at how their doctors told them of the the diagnosis.
I guess we were lucky in that Noah’s doctors all knew how to communicate the diagnosis to us. Dra. Padilla, our geneticist, is a founding member of DSAPI. So let me take her cue and write to the doctors out there who see our children everyday.
“I’m sorry po…”
Sorry implies that the diagnosis is pitiful. Yes kids with Down syndrome have complicated health issues but the diagnosis itself, I feel does not warrant an apology. Please don’t say sorry because our children are not tragedies.
“I’m sorry po anak nyo Mongoloid” – This from a doctor from a huge hospital in our central business district.
It’s Down syndrome, not Mongoloid. When Mongolia joined the United Nations in 1961, they asked that the term “Mongoloid” be changed. Langdown Down, the first doctor who studied Down syndrome (and the condition was named after him) observed that the features of individuals with Ds resembled those in Eastern Asia. He even labeled the condition as “Mongolian Idiocy” The people of Mongolia asked the World Health Organization for the term Mongoloid to be changed.
Also Jerome Lejeune, the father of modern genetics discovered the cause of Down syndrome (an extra copy of Chromosome 21) Trisomy 21. He discovered the cause in 1959.
So to me, A pediatrician who still says “Mongoloid” 49 years after the UN agreed that the M word is derogatory raises red flags.
I know these doctors really mean well and I pray that the communication of the diagnosis becomes better. Parents hear the diagnosis first from doctors and it’s important that the doctors are able to convey the diagnosis in a positive light. Yes that is possible! Why? Because Dan and I experienced firsthand what it meant when the diagnosis of Ds is shared to us by a compassionate physician.
This list comes from that experience:
1) Say Congratulations
It’s a new baby. A new blessing. It is a child. It is a birth not a funeral. A baby is ALWAYS cause for a celebration.
2) Deliver the Diagnosis Matter of Factly and offer Updated Facts
Please don’t be grim. Down syndrome is not fatal and it is not a terminal disease. Our doctor told us “Noah has 3 out of the 10 markers for Down Syndrome” but she went on to discuss the other good things she saw in Noah – his good tone, the fact that he’s malikot in his incubator and that he didn’t need any support for his breathing. Yes, hearing that Noah may have Down Syndrome was already such a huge blow to us but our doctor also highlighted how Noah was a thriving, healthy baby.
I must also emphasize that if facts will be given out, they should at least be up to date. Some of our parents in the group were told by their pediatricians that their kids may only live up to 5 years old. Imagine the trauma of hearing that your new baby will only live a few years. Right now, the average life expectancy of individuals with Down syndrome is 55 years old with some living well into their 60s and 70s. In the 1980s, the life expectancy was just 25 years old. Our dear friends John and Suz said it so well during Early Intervention that “there has never been a better time in history to be born with Down syndrome than today” The research, the treatments, the early intervention, the support system and the acceptance all help individuals with Down syndrome live long, healthy and productive lives.
Meet Ryan. He finished college and now works in an office. When he was born, his mom was told that he won’t live past 5 years old.
3) Tell them about the Down Syndrome Association of the Philippines
Our doctor told us about DSAPI right away. She told us of the amazing support system that this organization has created for families just like us. Before Noah’s Karyotype proved that he was positive for Trisomy 21, I was lurking the FB page of DSAPI and it comforted me so much to see how happy and fulfilled these families are. I did not sense sadness, only pride. I did not sense tragedy, only joy. I needed to feel those when I was processing Noah’s diagnosis. It was so helpful for me to know that we are not alone.
Here are DSAPI’s contact details:
DOWN SYNDROME ASSOCIATION OF THE PHILIPPINES, INC.
2nd Floor, 6372 Agrifina Building, Camia corner Meleguas Streets, Guadalupe Viejo, Makati City, Philippines
Tel. Nos.: + 63 (2) 895-36-06 or Tel/Fax No.: + 63 (2) 895-96-42
Our Facebook page: https://www.facebook.com/groups/53343128860/
DSAPI – Davao Branch Office:
c/o Trinitas EENT Health Clinic, Cembrano Bldg. 412 Malvar Street, Davao City
Tel/Fax: (82) 305-51-96
DSAPI – Cebu Branch Office:
8th Floor, Cebu Holdings Building
Cebu Business Park, Cebu City
Tel.: (32) 415-83-30 local 807
A lot of parents in our association have switched pediatricians after going through painful exchanges with their doctors that left them defeated and confused. While we were talking to them, I realized that just like me and Dan when Noah was born, what we looked for were empathy and understanding. Unfortunately for these parents what they received were misplaced pity, insensitivity and worse, indifference.
A Down syndrome diagnosis is heavy news to bear and to deliver so I ask our doctors that the news be handled with care and compassion. They hold such an important role when these families take their babies home and begin their new journey. May they strive to be remembered fondly by the parents that when their child was born, their doctor was there to explain and to offer them guidance and did not leave them in the dark.
Dear doctors…thank you for listening.