Saturday, August 29, 2009

I can't remember where I read or heard this, but somebody somewhere was discussing what should be the proper response of nurses and doctors towards a parent who is just finding out that their new baby has Down Syndrome. I would have guessed the proper therapeutic response to this kind of parent would be to listen, be silent, maybe say I'm sorry, maybe ask if the new parents would like to talk about it, possibly offer resources such as support groups, etc. Those are the kinds of things I learned in nursing school ions ago.....

However, the responses I read from parents were quite opposite of that! These parents were sharing their memories of the moment they received the diagnosis. It seemed that the way the doctor presented this information made all the difference in how the parents were able to initially cope. "There is something wrong with your baby..." is not the proper way for a doctor to introduce this kind of diagnosis.

Here is, FYI, what to say and what not to say to a parent just finding out their child has Down Syndrome.

Do NOT say:
1. "I'm sorry", "What a shame", "How sad"
2. "It could be worse" or "At least your other children are normal"
3. "Does that run in your family?" (or anything else that implies blame on the parents)
4. "God has a purpose in everything" or "God gives special children to special parents"
5. "I could not handle that" or "You are a saint"
6. "People with Down Syndrome are such happy and loving people"

DO say:
1. "Congratulations!" (Yes, congratulations, they are new parents after all)
2. "What a handsome boy", "He looks like you"
3. "I feel honored to know him"
4. "Tell me about Down Syndrome so I can learn about it"
5. "There will be hard times but there will be really joyful times too"
6. "She will teach us more than we will teach her"

I remember so many varying reactions to our announcement that we were adopting a child with Down Syndrome rubbed me the wrong way while some comments were very touching. Once John told his co-worker that we were adopting and showed him Ava's picture. After a bit of a silence, John announced, "I'm sure you can see she has special needs". And the guy smiled, and responded, "We all have special needs". I haven't forgotten that.

If you're parenting a special child, I'd love to hear how you received your child's diagnosis and what you remember about that first moment.


Anonymous said...

One that that irritated me about what people said about Sawyer (and also about our 2 who are adopted), "God gives special kids to special people" or "You are a special person". Every time it pops into my head (but luckily not out of my mouth), "So, you must not be so special, huh?".

Weird what things irritate you and what things do not. We knew from prenatal scans that Sawyer probably had T21 so we were better prepared than most.

I've heard horror stories from parents who were told in not so subtle ways.


Pan Cratius said...

Yeah, I like the co workers´ response, we all have special needs.

Alice said...

I like the ones who ask me if I am aware that A has Down Syndrome. They assume we must not know or we wouldn't have chosen him. Sometimes I explain, and sometimes I just leave them puzzled.:)

Daughter of the King said...

When my family adopted my first brother with Down Syndrome I was nine. I remember how my Grandpa refused to look at Brent or talk to him. This was all because he was Chinese and had DS.

Thanks for the post1 I hope that you don't mind but I put a link for it on my blogs post today.Valuable information that people shoudl know.
Sister to three brothers with DS

Alicia said...

the dr told myhusband, and my husband told me.

He was SO FINE, that I was fine too! I didnt had a relationship with God, so he share with me about Elijah the prophet,the story when he is in Mount Carmel.(1 Kings 18,16-39)

How he dare Baal prophets so they could know who was GOD

DS, is like the wood wet, people who doesnt believe in God will think that Elias wouldnt do anything because people with DS cant, but as that day the wet wood got on fire, the same way Elias will do amazing things with the power of God

Elias is Elijah in spanish =) and we choose the name years ago while dating and thinking on future, coincidence? I dont think so! That way the diagnosis came peacefully to my heart

The dr said various things I didnt like either

"He will be an angel forever, who will not know evil" HA!

"At least we can hope he is mosaic"

By the way when we told a friend about DS, he told us "so, what? he will still have me to love him and spoil him" He always remembers him on xmas, bday, kids day, and when he travels

jennifer... said...

Look at the blog on my sidebar titled 'Rivers of Joy'.  They have a DS child and their opening statement is that the Dr. should slap the parents on the back, pass out cigars and congratulate them on their good fortune!  I don't have to tell you how proud they are of their adorable little boy.

June Berger said...

I guess most people "insulted" us by assuming we "hadn't thought about it"??? Are ya kidding me? We PLANNED IT!! Like we don't know we may have the kids with us for the rest of our/their lives? To me that's a bonus!

What I wanted to share was my response to who now is my best friend, has been for 10 years. I knew her husband from the old church I used to go to. I ran in to him at our local carnival, he said hi and that he had some news for me. He and his newly married wife were expecting a baby. It was a girl and she had Down Syndrome. He said it without expression, just matter of factly, my response was "Praise God, isn't that wonderful!!" And then I looked at him and said "Isn't it?" He started to laugh, he said I was the only person he knew that had responded that way, other than he and his wife. He asked me to wait while he went to get his wife, she was sitting in the car, (this was the first time I met her), when he introduced us, he told her my response to their news, she started laughing and crying, she was so happy someone "got it". The rest, as they say, is history.

When their doctor told them the diagnosis he gave them their options without expression one way or the other. Immediately they said they would be having her, the doctor beamed and got teary eyed, he was a christian and they were his FIRST family that had responded that way without any hesitation. How sad that they were the first to respond that way.

Beth said...

We didn't have a prenatal diagnosis. Hannah was born at 1 a.m. After nursing and getting to know her a bit, I sent her to the nursery to get cleaned up, and promptly fell asleep.

The on-call pediatrician woke me up at 6:30 knocking on the door. He stood in the doorway, not coming in, and asked me what I thought about my baby. I said that I thought she looked like me when I was a baby. He said he thought she might have Down syndrome. Did I know what that was? Yes, I did--it's when there is an extra 21st chromosome. Then he went on babbling about Corky on Life Goes On. He was really lame, but I suppose he didn't give me the doom and gloom lecture that many people get. I remembered feeling like it was an out of body experience. I was sitting there, not listening to him, thinking, "Gee, I thought that doctors might have gotten better at this kind of thing. He's pretty bad at this."

What would have made it better was if he brought Hannah to me, and sat beside me and showed me what characteristics he saw. It would have been more REAL to me. It also would not have been all that much trouble to talk to my midwife who was in the next room to me, and have her come when he told me the news. I knew lots about Down syndrome--one of my best friends growing up had Down syndrome. I wasn't afraid of it, it was just unexpected.

Being told the news by a stranger was weird, but what was weirder was that I felt like there was a wall put up between me and Hannah. I felt like all of a sudden I didn't know her.

The doctor left, after getting my permission to draw blood for the karyotype (he actually left the hospital and didn't see him ever again). I called home, and blurted out the news to James. He woke up fast and was on his way (the older kids were at a friend's house).

Once I was off the phone, I realized that I needed to see Hannah. I had to have her with me. So I pushed the button for the nurse. I said I wanted her to bring Hannah to me. She said she was sorry but she couldn't. Ooooh! I don't think they had ever seen a postpartum mom move as fast as I did, running down the hall to the nursery. Mama Bear was fully loaded with fury. The nurse intercepted me, explaining that they took the blood for the karyotype from her umbilicus, and she had to remain immobile for an hour to be sure that the umbilicus would clot.

I was so mad! The doctor hadn't told me anything about that! I figured it would be a heel stick or a regular blood draw! But what really made my blood boil was that they had Hannah laying, completely naked, strapped to a circumcision board. I barged into the nursery and grabbed a blanket and put it over her.

From that point on, the medical staff started to treat both Hannah and me with respect. She ended up being critically ill with pulmonary hypertension, and we nearly lost her. The Down syndrome became the least of our worries, and now Down syndrome has become one of our biggest blessings.

Gee, I think I should turn this comment into a blog post Charissa! Sorry to take up such a big chunk of your blog space!

Charissa said...

Thanks everyone for your comments. I really think someone should tell these doctors! They need to know these things!!

Kerry Shealy said...

My nephew does not have Ds, but a deletion on a few chromosomes. He wasn't officially diagnosed until he was close to five. My sister and her husband knew something was wrong with him, and it really frustrated them when people would tell them that they didn't see anything wrong with him. He was nine months old and could not hold up his own head...something was wrong! When they realized early on that something was wrong my sister went through a grieving process. She didn't know how long he would live, if he would ever sit up, or walk, or talk, or be able to take care of himself, and go to school, and get married. It was very hard on her. I learned to let her grieve rather than to try to "cheer her up." He was five in March. He is sweet, and loving, and has learned to walk and talk. He has come so far! He may not grow up to be the man they expected, but they cannot imagine life without sweet Collin.