Tuesday, April 28, 2009

Request - Please Share Your Experience and Perspective

My good friend, Jodi, is a poli-sci professor at Cal State Fullerton. Let me just say first that everyone should have a friend like her. She has been such a wonderful support to me since Finn was born, taking the time to read and learn about Ds, and always there with a compassionate ear and an encouraging word.

This morning I got this email from her:

"So, I was talking with a former student yesterday about her post-graduation plans. She's graduating from Chapman University with a Master's in Health Communication. The job market is bleak so she's looking for internships to build her resume until the economy improves.

I suggested working with the NDSS on a research project to improve communication between doctors and parents when it comes to prenatal testing and Down syndrome. She almost jumped out of her chair with excitement. It's exactly the kind of work she wants to do.

I gave her a bunch of links to get started on her research (she was as horrified as you and I about the 90% abortion stat), but I was wondering if you'd be willing to post a request on your blog about what you and other parents would have WANTED to hear from your doctor in either a prenatal or postnatal meeting. What resources do you wish you'd been handed?"

As for me, I really can't say that there is anything I would have changed about the delivery of Finn's diagnosis. As I've said before, I declined prenatal testing, so we didn't find out until after he was born, and really, we sort of found out in stages. The first inkling I had was when Finn was several hours old and I thought I saw something in his face . . . just a few minutes after that, my midwife indicated that he had some markers that might indicate Down syndrome. I think she suspected pretty soon after he was born, but she went home and did a bunch of research before bringing it up to us. In all the babies she had caught up to that point, Finn was the first with Down syndrome (and he's so far been the only of "her" babies with Ds), so I'm sure she was scared about how to deliver a possible diagnosis. She was very compassionate and did her best not to alarm us.

When Finn was diagnosed with a duodenal atresia in the ER, we were told that that was a marker for Ds, so that was another step in receiving the diagnosis. The geneticist who came to examine him and take blood for his karyotype in the NICU was very kind and warm and compassionate. It stands out in my mind that she wasn't cold or distant, she seemed to understand that news like that would be painful and hard to digest for parents, and she behaved accordingly. Even when she gave us the confirmation of his diagnosis of Ds a few days later, she was very warm and compassionate and made sure to tell us that his future could be a full and positive one.

In the NICU we were given so much paperwork about Down syndrome. Lots of pamphlets and information sheets. Most of it I didn't look at for a long, long time - months - because at the time it was just too overwhelming. Someone met with us in the NICU regarding getting services for Finn as soon as possible after he was released from the hospital in order to maximize his potential. She was very informative about the types of services available.

I honestly can't think of a single person who gave us any indication that Finn's future might be bleak. Even our pediatrician has been unendingly positive - except for the whole breastfeeding fiasco very early on, when Finn wasn't gaining well and the pedi recommended putting him on formula. Instead, I worked with a wonderful lactation nurse who helped Finn and I work out all the breastfeeding kinks and establish a good nursing relationship, and he magically started gaining well. I went back to our ped and told him that he would better serve his mothers who were motivated to breastfeed by referring them to a good LC rather than pushing formula, and he apologized to me and admitted that he had assumed that Finn would not be able to nurse well because he has Ds. He said he would never make that assumption again. Ever since then, I've felt that he and I are more of a "team" in Finn's well-being, rather than him being the authority figure because he wears a white coat (well, really he doesn't, but you get my meaning).

Anyway, so I have to say that for us, the way we found out about Finn having Ds was I think as positive as it could have been. All the professionals we had to deal with were positive and compassionate. We were given lots of information and resources. I do think that more breastfeeding info and help should be offered to moms who are receiving a prenatal or postnatal diagnosis of Ds, because I think too often the assumption is made that the baby won't be able to breastfeed and that's just not the case. And babies with Ds can benefit even more from breastfeeding than "typical" babies, so I think it's imperative that moms be given the information.

Please share your experience and what you would have liked to hear and receive when you received your child's diagnosis.

Thanks ladies!


Megan said...

Our experience was very positive, as well. The CNP who gave us the final Dx had experience working with people/kids with special needs, so she came from a great background to give us the necessary perspective. Some things that she said that stand out:
She's just like your other daughter, she'll just likely need a little extra assistance.
She'll learn to walk and talk, read and write.

She also emphasized the early invention services.

I'd say, if I had to come up with a negative, that I wish they had come to us earlier with their "concerns" because we saw it immediately. It wasn't a shock to us when they did come to us (she was born at 1:55 and it was morning rounds when they mentioned something). I just felt like there was this big secret, or something. Although, on the flip side, we did have a great bonding time with her where we didn't have to digest that news, so maybe the way they did it was right.

My Mom, who completely lost her shit, called her sponsor and left a tearful, hysterical message. When her sponsor called her back, and my Mom told her, the sponsor's response was, "Oh, is that all". I thought that was great. You know, sometimes you just need a reality check.

I will say that I think, for me, I'd have a lot harder time dealing with a prenatal Dx. We didn't have prenatal testing because we woulnd't have terminated, but I wonder how we would have felt if we had received the prenatal Dx. If we would have considered termination. I think, in a lot of ways, our stance of "we wouldn't do anything" came from arrogance. It couldn't happen to us. It would have been a lot of soul searching and the delivery of the Dx would have held a lot more importance.

Adrienne said...

I have a prenatal diagnosis as you know, and while it was not all that negative I was given absolutely no inof. on DS except a couple of national websites from the genetic couselor once I told her we would not be terminating. I think it would have been nice to get just a pamphlet after we did the amnio and waited for the FISH (quick results) just to see that there is hope for these babies but instead I was left to surf the internet and thank God I found blogs that were positive because I was freaking out! Honestly, for a brief second I considered terminating but my beliefs kept me from doing so but I was still thinking our lives were over and we were going to have the hardest time and our girl's lives were over as well. So a little info. from the docs office would have been nice because if it weren't for my beliefs and the blogs I found I could have made a bad decision I believe. I realize many people don't share the same beliefs so if they find the awful medical info. on the internet with no other hope or help from their docs then of course they are going to terminate because no one has told them that maybe it isn't so bad.

Jen said...

Prenatal diagnosis here...heart defect found first, then amnio determined the DS. The specialist that found the defect said a lot of "I'm sorrys", which was really fine, because I know that he was. He was compassionate about the DS, too, and gave us some info and also offered to hook us up with some parents of kids with DS. My OB was also compassionate, though not full of tons of info. I think he's a wonderful doctor, but he did say a few of those "happy loving kids" comments. However, I forgave him when he gave me his home number and said to call him at any hour of the day or night when I was in labor, because he was determined to deliver Evan.

Geneticist was great too...did not get the impression that he felt sorry for us one bit. He was very positive and matter-of-fact about the whole thing, and said that with the proper supports, there would be nothing that Evan couldn't do.

Only bad one...one of the cardiologists we saw before Evan was even born. He was immediately negative about the possibility of breastfeeding and came right out and said that we should expect Evan to need a g-tube (because he'd be so weak from the heart defect). He also wanted us to pray with him, which I think you know is totally NOT my thing. We did not see him anymore after that, instead choosing to be seen by one of his partners, who is wonderful.

So. That's it in a nutshell. I know that there's tons of negativity out there about this, but not so much in my own experience. For that, I feel grateful, because if I had been exposed to much of that, I might have ended up making a different decision.

Jen said...

Oh, and I meant to say that I did in fact have to call my OB at home on his day off, and he did make it in time for the delivery. Awesome. And also, Evan had NO symptoms from his heart defect, nursed like a champ, and a g-tube was never even a remote possibility. So, take that, Cardiologist. :)

Ann said...

Our daughter was diagnosed at birth, I did not have prenatal testing with any of my other children. I was at increased risk because of my age, but I still did not want to do testing for personal reasons. We received the diagnosis in the delivery room, and then we got to hold our little daughter.

A nurse on staff printed an informative brochure from the NDSS. That helped because we had no idea what down syndrome meant....

I went home and at read books (my favorite GIfts) and scanned the internet. And then I found blogs. I think the most important "perspectives" that new parents can receive is from others. While I do not blog, I do enjoy reading of the experiences and triumphs of other families. I am in awe of the generous moms who are sharing their experiences with honesty, integrity, humor, and strength. I think anyone getting a diagnosis would be well served in receiving a list of blogs!!!

Tara said...

We declined prenatal testing, but our u/s showed some soft markers and increased our risk to 5%. We were told immediately after birth and I wish they would've just kept their mouths shut for an hour or two. I would've liked, at the very least, to have had a chance to hold him before they dropped that bomb. I would've liked the opportunity to discover it or suspect it on our own, before being told like that. He was medically stable, so there was absolutely no need to rush it.

Also, we were given zero information about Ds in the hospital - not one pamphlet or brochure or anything. We were there 3 days with no access to the internet to even Google it. I'm working to change that myself.

Everyone was really apprehensive around us and I learned very early on that people responded like we did, so I felt the need to be super positive. I couldn't handle it if anyone responded with pity.

Karly said...

We had no prenatal testing and nothing come up in the anatomical u/s. The OB that delivered me and the hospital pediatrician were both gentle and loving when they delivered the news. Everyone was very positive and also spent lots of time doting on Kailey. We had tons of support for breast feeding...no one ever suggested that we give up because of Ds. They were in fact not going to let me go home from the hospital because she wouldn't nurse and they wanted to help us more, but I was the one who said that she was clearly starving and I would give her formula (as I was not able to pump anything and she would never latch).

The most important connection we had was from our L&D nurse. She gave us the number of a family with a 2 year old son with Ds. They run a local Ds group. Regardless of whether I had a prenatal Dx or not, that is the connection I needed. To see that there was this smart, happy little boy made me feel that while this whole Ds thing might not always feel okay, it would be okay. So I think it would be wonderful if the people giving Dx could always have numbers of real people for you to connect with (and even blogs to read which chronicle others walking the same journey).

TUC said...

The first inkling we had that something was wrong was at my 28 week 3d u/s. The tech found a heart defect. She chastized me for not having submitted to a 20 week 3d u/s because that's when she could have pinpointed the ds markers. I never went back there.

The fetal cardiologist we went to told us all about the heart defect and then asked if we had any questions. When I asked if something so wrong in the baby's development "instructions" was an indicator of other things wrong, he told us that we had an 80% chance of ds. Then he listed everything you can imagine that can go wrong for a child with ds. I was chewing my lip off so I wouldn't have a break down in his office. However, he told us that our baby deserved the best of everything and that the world wasn't ending, that ds is ok. So it was mixed.

No one suggested an abortion to me but no one gave me any really good info either, a few pamphlets and some "new parent" books that made me sick.

When she was born, my ob didn't get there in time and the hospital staff had no idea what we knew or didn't know. The whole birth was a fiasco, but no one even commented on her obvious ds. No one congratulated us or said anything nice either. 5 hours later the NICU "police" showed up and took her away.

We spent the next 16 weeks in NICU and PICU. The staff was not well-informed about ds. They were nice and encouraging but didn't know the answers to most of my questions. And breastfeeding is a nightmare in the NICU, although we finally managed it.

I would have prefered it if my OB was the one to tell me the news. And I would have wanted to get hooked up with other ds moms prior to my baby's birth. A few links to some of the good ds blogs out here would have been great and reading the book Roadmap to Holland would have helped too. So for me the #1 change I would ask for is better reading material and connections once the news is dished.

Megan said...

Another comment to follow up on other comments. ;-)

1. We, too, were told early that people would respond to the way we relayed the "news", so we were very conscious of being positive. At first, it was definitely a forced positivity, but it became easier.
2. We also experienced the super doting staff. I mean, it was like Stella was their own little doll baby. It was amazing. Totally different experience than with A. They made her little bows and stuck them on her head. Always talked about how sweet and beautiful she was (is??). Made up little pet names for her. Crazy. I can't believe I'd forgotten that....thanks for reminding me!!
3. A list of blogs is a great idea. I often have wondered why the local Ds groups don't have an "outreach" person who a hospital would contact when a little kiddo arrives. I'd totally do that - take a basket of goodies, books, pamplets and support. I did give "Gifts" to our MWs at my 6 week p.p. as they had NO information.

Lovin Mama said...

We did not find out Goldie had DS until after she was born. I think the pediatrician did an ok job of telling me. I wish they would have given me some information on DS. I had to wait until I got home to do my own research.

I had the routine screening and 3 u/s while I was pg. I talked to a genetic counselor this weekend who said it is rare to not have anything show up in my situation. I wanted to know because I wanted to be prepared. If we had needed a cardiologist I would have wanted to pick one and to be prepared for any breasfeeding challanges. However, I'm glad now that I didn't know. I think my pregnancy and labor would have been treated differently. In the end everything worked out and Goldie had the birth she needed.

Chrystal said...

My situation wasn't much unlike what I've read here. It wasn't HORRIBLE, but there was absolutely room for improvment.

We received M's dx the morning after she was born when the Ped on rounds asked if we would agree to a blood test.

What happened after that was the effed up part. The young Ped we were assigned gave us print-outs from medical journals with all that could possibly go wrong. DON'T DO THAT!

I would have loved a copy of Gifts, some understanding, a hug, a blog address, and maybe a real person who had been there/done that (or their phone number at the very least). I needed to know that what I felt was ok and that it would get better. I needed to know that my healthy baby was going to grow up to be ok.

I went to see one Geneticist (well-known and popular with parents in our area at the time) and I remember him saying, "I have no reason to believe that your daughter won't do as well as any other child I've seen with Down syndrome." Totally non-committal, but just what I needed to hear.

So, yeah, more of that.

Lisa said...

We didn't officially know before Bridget was born (my intuition kicked in, though, and I strongly suspected). I got teary-eyed reading through the responses here. The days after her birth were overwhelming, as it is for everyone who has received a Ds diagnosis--prenatally or not.

That said, I am in complete agreement with what's already been shared. More, accurate information and well as links to local parents, support groups and blogs. Lists, packets, baskets...and real people to talk to (if the parents would like)in the hospital.

We were handled with compassion, but there were many "I'm sorry's"(either in words or expression). We left the hospital where Bridget was born within 24 hours because she required surgery right away.

So other than the initial neonatalogist (who was kind and thorough, and made few predictions about Bridget's future--the right way to handle things), we mostly had early experience with the geneticist and the nurses and doctors at our local Children's hospital.

The geneticist was awkward (reminded me of a flight attendant with his lanyard & uniform of navy slacks and a white short-sleeved button down...the same thing every time we saw him). He kept leaning in closely and saying, "Well, I'm really just here to say HI!" and referring to me as, "older mothers like yourself" (I was 36 at the time). He confirmed her diagnosis through bloodwork and gave us some basic information about Ds, but nothing really we didn't already know. Whenever we talked with him, I felt like we were participants in a study, which we clearly weren't, and which added to the awkward vibe.

There was a nurse in the NICU who basically said the same thing Jen heard, that with our love & support, there would be nothing Bridget could not do (awesome). Another nurse quietly encouraged us to trust our instincts and go against any doctor who made predictions or suggestions that didn't jive with what we thought or felt.

I definitely got the feeling that most of the medical staff we dealt with had very specific ideas about children with Ds (low muscle tone, poor feeding, etc.), and they were making plans for her treatment based on those ideas. They seemed genuinely surprised and pleased at our unwavering support of/advocacy for her. We kept asking for them to look at her as an individual, not at generalities about preemies or kids with Ds. By the time we were finally able to leave, I think we had changed some minds about children with Ds. It was almost like they'd had little experience with the diagnosis (which can not be possible), or that other parents did not speak up.

Seems like the parents shouldn't have to stand up and say, "This is my child and I believe in her. Please don't treat her like a number or a diagnosis. This is a person you are dealing with. And that person is an individual, who is loved and supported, and who will have her own unique set of challenges and strengths. She will write her own life story."

Bridget did not have low muscle tone, or the anticipated feeding problems. Her swallow was not fully developed at first, and that meant that we had to thicken her food, but she was willing and able to eat. Any difficulty she had right after she was born was related to being premature, not to having Down syndrome.

One thing that seems strange to me is that when a Ds diagnosis is given, doctors often feel the need to share every possible potential problem in that child's life. If there is a specific medical concern, then they should discuss that and maybe give a brief overview of some of the things that are more common in individuals with Ds. However, they should make it clear that not everyone will have all of these things. In addition, I find it strange that parents are often told things like, "Your child will probably have a difficult time counting money"...huh? The labels and underestimation starts right there. Yes, parents should be aware of some of the things they may deal with in the future, but should be told that it is not possible to predict with certainty the health, achievement and happiness of any child before (or when) they are born.

There are so many potential risks and pitfalls in raising any child. A list of all those things would upset any parent...especially when it is given just as a new little life is beginning. There are also untold joys and rewards in raising any child, typically developing or not. That perspective is vital...especially when it is said just as a new little life is beginning.

Accuracy, support, hope...

Jodi said...

Thanks to all of you who shared your experiences. This will really help Jennifer get started.