Welcome to Paradise

by Sarah Grandfield-Connors

There is a short essay called "Welcome to Holland" which is meant to comfort a parent who has recently received information that their child has some type of developmental disability. The premise is that you have booked a trip to Italy, but your plane was re-routed to Holland. You miss the idea of Italy, the culture of Italy may always be a mystery with its own language and art -- but Holland is stunning itself. Beautiful but different. 

When we first understood that things with Beatrix may not go well someone sent me this essay. It was welcome as an affirmation of the life I was embarking on -- the life I assumed included a child with Down Syndrome -- because whenever there's a problem in pregnancy, that's the "worst" that could happen, right? 

She Brings Joy

by Sarah Grandfield-Connors

I have had a difficult time writing something out for this project, as I am going through a low time. Even after four years, there are low times, when the sadness leaks out of you and touches everything around you.

I wanted to begin with an introduction and a background to my daughter's story. I hope to write here again, and would love to know that when I do- anyone reading will see the human being that my baby was, instead of the still images of a photograph.

When my Beatrix died, I shared her story with every organization that I could- what I will share here will be similar to what I wrote then, with some changes as appropriate, as an introduction for you, and a reminder for me. That even with the low times that followed, there was beauty in that storm.

There are so many important things that I would like to share about our story. The journey we went through to have our baby is just as important as what happened after she was born. I sometimes forget about that, the life that she lived before she lived her life.

Choosing Bentley

by Ashley Bowman

December 24th 2013, the day we got a positive pregnancy test. I remember being so excited I almost couldn't wait for my husband to get home to tell him, he ALMOST found out over the phone. We had been trying to get pregnant since July and although it didn't take but a few months, it felt like forever every time I had a negative pregnancy test. At one point I remember thinking to myself: you have two healthy children and maybe you should just be happy with that. I look back at that now like it was some sort of foreshadowing for what we were about to experience in the future, as crazy as that sounds.

We already had two beautiful children; Riley, who is 8 years old going on 16 and Hunter, he was 3 at the time. This baby was going to be our last. I remember being so happy and sad at the same time knowing that this was the last time I would experience all the joys of being pregnant. The next few days at several different Christmas parties it was hard not to scream the news but we wanted to wait until after the first doctors appointment to make sure everything was okay. It felt like forever until January 22nd was here and we had our first appointment. Everything seemed to be going great and we even got our first picture of our little peanut, I remember being really happy with our choice in doctor as she was going to be taking extra precautions due to my history of eclampsia. That evening after our appointment; we went from house to house telling our family. Everyone seemed to be so happy and excited for us. It finally felt official that we would be completing our family in September.
  
As the weeks went by everything continued to go as planned until March 6th, the day we were supposed to find out the sex of our baby. My doctors office had a special package where you could find out as soon as 14 weeks what you were having and the anticipation was killing my husband so we opted to find out early. I think deep down I always sensed that something was wrong, I am not sure how as everything pregnancy wise was going fine. I can't explain it, I just knew but as the ultrasound tech started measuring things during the ultrasound I just knew something was wrong

CHOP - Autopsy Results

Last Thursday my husband and I met with my high risk CHOP doctor to go over Hannah's autopsy results. We had already been given a copy, but we aren't doctors and needed to hear everything from the doctor.

We weren't there long. The doctor took us back right away to her office and confirmed what we all expected, Hannah had Turner Syndrome. Her 45, X chromosome was completely deleted. All of her conditions/medical issues all were caused by Turner Syndrome. The severity of Hannah's Turner Syndrome was extremely rare. My doctors actually told us that most other fatal diagnosis' couldn't even compare to Hannah's fatal diagnosis. So, that fact that she only had Turner Syndrome and nothing else was a little surprising to us and the doctors.

Hannah was and still is our miracle. That fact that she lived into her 24th week is a miracle. I'm so proud to be her mommy and call her my daughter.

p.s.
A fatal diagnosis is devastating for any parent. In the end when our baby dies it doesn't matter the severity of the fatal diagnosis, if it was expected, if it was a shock, due to a fatal diagnosis, or no explanation at all. There is still a precious and innocent life that is lost. This is just my story and my journey.

Back to CHOP Again

This afternoon we go back to CHOP, but instead of trying to help our baby we are going to officially hear the results of our baby's autopsy. It a strange feeling. Our baby shouldn't have had an autopsy. She should have been growing inside me and making her arrival around Easter. But instead she passed away and an autopsy was performed.

Jason and I have a copy of the autopsy. We got it the day it was finished about two weeks ago. The only chromosomal issue is the deletion of the 45, X chromosome (Turner Syndrome) which was completely expected. It also lists in detail everything that was wrong that we were already told. I don't want them to tell me again everything that was wrong with Hannah. I've heard it from doctors over and over again. Turner Syndrome is not hereditary so I don't want to meet them for them to tell us that. But maybe it will be good for me to hear. Maybe it will give some closure on her health.

On top of it all my doctor at CHOP told me when we were there for a second opinion that I could contact her personally with any questions or concerns. So the next day I emailed her. I never heard from her again. She read the email then went behind my back and called my OB/GYN and told her about the email. I'm dealing with some forgiveness issues. This doctor had good bedside manner but lied to me. I'd rather she not offer me to contact her than for her to offer it then just ignore me. I'm asking for God's help so I can forgive her. I'm in a much better place today than I was a week ago with it.



© The Children's Hospital of Philadelphia