Thursday, March 15, 2012

Diagnosis: Down syndrome ... Part Two

This is the seventh in a series about the new tests that detect Down syndrome in the first trimester of pregnancy. It is our hope to bring awareness to concerns regarding this test, as well as bring a call to action. As always, thoughtful and respectful discussion is encouraged in the comment section.

Kai


If you missed yesterday's post entitled Diagnosis: Down syndrome, I hope you will take a few moments to go back and read it. Some of today's stories are a bit longer than those from Part One, but they are so powerful, I could not bring myself to shorten them.

A common question I'm seeing in the comment section during this series is "why is information in the form of a test a bad thing?". I just want to be clear- I am not against this test for information purposes. If this test is offered at some point during one of my OB check-ups during this pregnancy, I will take the test.

I say that because of our experience with Lily- we decided not to do an amnio, despite many markers that showed up on a level 2 ultrasound. Because of that we never knew her diagnosis until she was born. I was told by the best heart specialist in the area that her heart was completely fine, and "even if she does have Down syndrome, you will be fine delivering at your (small) hospital." What I learned after having Lily, is that our hospital was not equipped to handle many of the other health issues that are associated with Down syndrome, aside from heart problems. Lily needed a blood transfusion/exchange procedure that could only be handled at OHSU- almost two hours away from us. As a result I spent Lily's first night away from her, and the rest of her stay in the NICU in Portland was extremely difficult on our family. I could not be admitted as a patient at OHSU, so that week was a nightmare to say the least. If we had known Lily had Down syndrome, and known what our hospital was equipped to handle, I could have delivered at OHSU and been across the hall from Lily, and treated as a patient instead of a visitor. We could have made arrangements ahead of time for family to stay with our children while we were away, and could have saved ourselves those first frantic, painful moments of explaining to our children that Lily had Down syndrome before she was rushed up to OHSU.

All of that to say- I am not against this test in theory. I think preparation can be a wonderful thing, and God took care of us all through it all, despite our (self-inflicted) lack of preparation. Looking back I realize that I was in a bit of denial- it wasn't until just a few weeks before Lily was born that I started researching Down syndrome "just in case."



Thank you so much to the moms who contributed the following stories... in some cases these women are brutally honest, and I have no doubt you will be as moved as I was to read their heartfelt words. 


********************************

We were sent to the Maternal Fetal Specialist who informed my shocked husband and myself that our baby had a complete AV Canal defect and carried a 40% chance of Down Syndrome and a 20% of Trisomy 18...wow...

I was in shock, I was hysterically crying, and I was being pressed to have an amniocentesis done right away...after all, I was already 21 weeks pregnant, it would take 10 days for the amnio to come back, and I could only terminate up to 24 weeks. Time was a ticking, as the MFS told me....

I told them I didn't know what to do, I didn't want to terminate...I didn't want an amnio...

And she also said that surely I would want to know, that way I could make a more informed decision...

And then she went on to tell me that having Down Syndrome wasn't too bad, but paired with her heart defect it made it even worse. She would be even slower....she would never go to regular school, never be in ballet, never play soccer, never never never....

I scheduled the amnio...

While I was waiting for the results Eric and I went to perinatal cardiologist with heavy hearts. We assumed he would tell us it was hopeless, and we were preparing ourselves for the worst possible news and the fact that we would be terminating our baby within the next week, right after the amnio results came back...

He was shocked. The perinatal cardiologist did not understood our tears. He assured us he could fix her heart. Yes, it was a serious defect, and yes, it would be tricky, but he could do it. And the Down Syndrome she may or may not have? Didn't matter a bit. 

Wow...we were taken aback. But hopeful. And that's when I knew I'd be keeping my baby.

So when we went back to the MFS five days later for the amnio results and were told "I'm sorry, I wish I had better news, but your daughter has Down Syndrome."

We were given the names and numbers of the doctors to call to terminate with the advice to call right away, but thank the Lord that I threw that paper away....because if I had called then the world would be without this sassy, spunky, naughty, loving girl. My Brooke..




 ********************************

When the results came back they did not offer termination. Everyone was positive and excited once they saw that we were excited. My doctor told me a personal story about a friend of hers having a baby with Ds and the genetic counselor told us several times about support groups we could join. We were given the book "Gifts" from the genetic counselor (who is fantastic). I did have doctors and nurses apologize that this was happening when we initially found out. Overall, we had a very positive experience and never had to deal with being pushed to terminate!

Harper




**************************


During the Level II ultrasound, several soft markers were found giving us 1:4 odds that our baby would be born with Down syndrome. At that appointment our perinatalogist mentioned that some couples do decide to pursue termination of the pregnancy due a diagnosis of Down syndrome, but he does not recommend it because of his religious beliefs.

About a week after the amnio, the perinatalogist called with the results. He said very matter of factly that the amnio was positive for Down syndrome. He then indicated that his nurse would be calling to set up regular ultrasound and non-stress test appointments to monitor Evan's growth in utero.

When the nurse called, she mentioned that another nurse in the office had a teenaged son with Down syndrome and would be happy to speak with us. When we met with her, she mostly discussed what life was like for her at that moment: being an advocate for her son at school and teaching him life skills at home. We also met with a geneticist who gave us brochures and contact information for NADS. I did end up contacting NADS when Evan was a few months old. They put us in touch with a family who had a two year old with Down syndrome. We didn't stay in contact, but the mom gave me a welcome packet from NADS which included information about Early Intervention and the book Babies with Down syndrome: A New Parent's Guide.
 

Evan



*****************


The doctor called and said, "This is Dr. H. I have the results of your amniocentisis and I have bad news for you...Your baby has Down syndrome... Do you have any questions?"


At my next appt with my OB/GYN, we had to start talking about delivery options. But he did take the time to give me a folder of information on Down syndrome.

What I remember about it is that there was way too much information. In WI the Birth-to-Three programs are run by the counties, and my OB/GYN saw patients from 4 local counties, so each flyer was in there. 

What I really needed was some sort of what-to-do-next sheet. The most helpful flyer in there was for the local parent group. I ended up meeting a few of the members prior to delivering Micah and that was invaluable.

The local DS group in that area has since updated the folder significantly.
Micah


***************


I was asked if I wanted an amniocentesis. I said yes. 2 weeks went by and I got called into the doctor's office. They told me my son had Down syndrome. The doctor sent me back to the genetic councilor. He didn't offer any information or resources. While at the genetic councilors office they told me that I could have an abortion. ( I already made up my mind I was keeping my baby). They said I was very young and that it would be to hard for me to raise a baby with special needs as a single parent. He said everyone will understand if I do it. I told him no. I of course was crying and upset. So he said I'll give you 2 weeks and I said I don't need two weeks. But he told me to come back in two weeks to give him my decision. He gave me some papers about Down syndrome and that was about it. He didn't say much to me about it. I actually had to look it up ,and I got some books from the library. At the time (11 yrs ago) I couldn't find much positive info (like now!!)


*************************



 We had the amnio at 17 week and got the FISH results 2 days later. The geneticist called with the results. She was very nice about it, she said she had our results and that the FISH showed the extra 21st chromosome. She didn't say she was sorry or sound sad, just gave me the facts.

She told me she had also been in contact with the Ds association in Denver and they were sending her some information for me if and when I was ready for it. She never mentioned termination at all and most importantly she never said she was sorry! At the time that didn't matter because we had decided that we would terminate if it was Ds. 

After we got the final results both my husband and I were devastated and sick with heartbreak. Heartbreak that we were going to terminate a much wanted baby girl, we just didn't think we could do it and we worried so much about what it would mean for our boys. When I say sick, I mean really sick, vomiting, headaches and we couldn't sleep, it was awful.

I made the appointment and decided I wanted to get some clothes that weren't maternity to wear afterwards so I wouldn't have that reminder. I drove over to the next big town and was parked working up the courage to get out of my car when a woman and her son parked directly in front of me. They got out and I noticed he had Down syndrome. He was probably in his late teens and they looked normal and happy. I watched their interaction and it hit me that, that could very well be my life one day. I realized I was being so scared that I was going to kill someone because I was afraid! I wouldn't ever be able to kill another human being, yet I was going to kill my daughter?

I never got out of the car, I drove straight home, it was an hour drive and just thought about things and did a lot of crying. I got home and as soon as I walked in the door I told my husband we had to talk. I started crying and told him I couldn't do it. He was so HAPPY! I was worried he would be upset and here he was crying tears of joy, he was going along with it b/c he thought its what I wanted and what we should do. We called together and cancelled my appointment, it was for the next day! The woman told me she had NEVER had any call to cancel a termination.

From that moment on we have never looked back or felt we made the wrong choice. Now that Sister has been a part of our lives, we look back and think how could we have been scared or worried for our boys. They love their sister so much and never once have noticed she is "different".

It's not the best story out there, but it's our story and if I could every see that woman and her son again, I would hug their necks and thank them. I KNOW if Michael and I had gone through with the termination we would be divorced and both of us in a bad place.
"Sister"


********************


I remember being called into the doctor's office to hear our amnio results.

We entered the large wooden doorway into a grand and beautiful office nestled in the corner of a Catholic Hospital in NY. There behind a big wooden desk sat our doctor... with the only good lighting coming into the room was through the stain glass illuminating the room.

The first words he muttered after we sat down where "I'm sorry," followed by "your son has Down syndrome".

Both my husband and I were holding hands, with my free hand rested on my growing belly and at  21 weeks gestation our little Grady gave me the biggest kick in that same instance.

The next words that came out of the Doctor's mouth, echoed like a choir in a church..."you have two weeks to make a decision for abortion".

Firmly we stood against his suggestions and were prepared to tell him our plans to keep our child.

Nothing could change the fact that this doctor had nothing nice to say to us; instead he was busy giving us more information and timetables on the pathway to death rather then shedding any light onto this new journey.

 Immediately were set up with a genetic counselor appointment and sent home on our way. We left with no information, no support and if it weren't for God... they left us no hope either. I'll never forget that office where a priest once made his study many years ago... the stain glass that illuminated the news delivered to us and that doctor who failed to show an ounce of grace or care for our little Grady Wayne... A few things we knew for certain as we drove home... We loved our child, that doctor could not be the same doctor to welcome our son into the world with joy...  and that God would see us through it....no matter what.


18 comments:

Not a Perfect Mom said...

thank you so much for having me!
all of the stories are beautiful...but Sister? that one just about bawled me over...

Faith said...

Hi,
I'm a NICU nurse and I'm hoping that you will make a post like this about postpartum hospital staff. (Or perhaps you know of something already made.)

I would love to hear from parents about their experiences and how we could improve our interactions. Basically, I just try to start with congratulations and lead others by example but I don't really have anything to show my fellow care providers how parents would like to be treated.

Faith said...

Oh, Patti
My heart is burning within me!
I went back to cleaning my bathroom after reading your post and these words played in my mind-

"I watched their interaction and it hit me that, that could very well be my life one day. I realized I was being so scared that I was going to kill someone because I was afraid! I wouldn't ever be able to kill another human being, yet I was going to kill my daughter?"

Jesus, PLEASE cause many more of these interactions to occur!! I pray that every woman that receives a prenatal diagnosis of Ds will encounter a child in this way before she can go through with a termination. Holy Spirit, please cause these divine encounters to happen! Today, Jesus, please!

Patti, we can not change the effects of this test but we SURE CAN pray that the Holy Spirit will cause an interaction like this to occur.

--
Oh, and I totally forgot to say Congratulations!! :)

Caitlin said...

I've been reading all of these, but something about this one is just begging for a comment. For 1, all the pictures in this series are FANTASTIC. I find myself waiting to see sweet new faces all day long!

Secondly, some of these doctors and/or medical staff have obviously never spent time with a child who has Down Syndrome. You can't look into their face and not feel something. When I lock eyes with a child with DS, I feel like they know so much more about life than I ever will. I'm sorry that people are sorry when they hear a diagnosis like this. The child isn't sorry, many times the parents aren't sorry, so what gives the doctor the right to be?
Anyway, thank you so much for putting this together; it blows my mind more and more each day!

gwen said...

Loved the story about the couple who met with the perinatal cardiologist. I don't know what it is about these cardiologist, but they honestly know something many docs do not. While all the midwives, neonatalogists, and other staff were falling all over themselves to express sympathy and sorry's over our diagnosis the ped cardio surgeon was telling us how we would surely have one of THE cutest babies ever and he would fix her heart right up! I do understand where you are coming from Patti. We need more medical practioners who practice in relating to people rather than just the relating clinical facts.

Crystal said...

Wow, the one about the lady seeing the DS boy and his mom in the parking lot was POWERFUL!

Danielle said...

'sister' story killed me. So precious is a life! Thank you patti for all your hard work & all u do

cara said...

Sister's story is SO powerful!!! I feel like Faith on here. And I am amazed that this mother realized she could not ever kill another human being, and yet, she was going to kill her own daughter. Wow! And she was exactly right; she was going to kill her own daughter. I am like Faith and pray that the Holy Spirit would come upon women like this. It is more than obvious that God was working in her life. And look at Sister!!!! She is precious, precious, precious.

And I love hearing about Grady!! Because of God in their lives, they knew he was a gift. That picture of him just melts me.

All the pictures just melt me. These children are amazing. I know I have said this over and over, but THANK YOU Patti for what you are doing. Thank you for being a voice for our children.

Julie said...
This comment has been removed by the author.
Julie said...

Thank you, Patti

Mike Sullivan said...

I have to be honest and say that I do a lot of advocacy for life around this issue. When I read that a Catholic hospital is offering abortion the cause seems lost. But the Truth came to that mum in the parking lot and I see hope.

Allison said...

This is such an incredible and informative series. You are amazing and I feel blessed to call you friend. Thank you for all you're doing, and for all you do for me! Love you! --and all of your kiddos! :)

Jenny said...

These stories have me in tears!! I am so glad you did not shorten any of them...You were right, all of them, each story, was incredibly powerful! And what beautiful children :)

angie said...

I am loving all of these stories. I am saddened by the medical professionals (whose purpose I thought was to preserve life) who encourage these little lives to be destroyed, but also so encouraged to hear that there are some that are there to encourage and support families.

I also agree that these photos are amazing. So many parents blessed with so many beautiful children. :)

Lisa said...

powerful post - thank you Patti

Sylvia said...

Love, love, love this series you have being doing!
congratulations to you too.

Suzanne said...

I am so proud to say I am "Sister's" grandmother! What a blessing she is to ALL of us. When her mom and dad told us they were considering termination we didn't offer advice of opinions, we just promised to pray for them and that God's will be done. Ho thrilled I was to get that phone call saying Sister would become a part of our family. There have been hospitalizations, numberous illnesses and may frightening days and nights but I always knew that God, having brought us so far would not desert us. He never has. Today she is a beautiful little girl, healthy and full of life and joy.

Rachel Douglas said...

Love this series.I love you giving birth stories a platform to be heard. Each unique. Each beautiful, down syndrome or not, all babies and their Moms living their lives. How perfectly perfect.