Choosing Bentley

Choosing Bentley

by Ashley Bowman

intimate-1432768December 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.

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The Support of My OB/GYN

The Support of My OB/GYN

by Heather Kimble

96d99-thankyoudoctorThe day we received the horrible news that our Hannah was “incompatible with life” at maternal/fetal medicine my doctor made time to see us right away. I thought I would receive options… some type of hope, but I didn’t. I felt pressured and unsupported. I was in shock by this horrible news and being told to terminate I could barely talk. However, once my doctor knew that termination was not an option it was never brought up again. My doctor is one of the few prolife doctors in my area. I was never questioned, pressured, or judged by my doctor. My doctor kept an extremely close eye on me because of the serious risk of mirror syndrome. She did everything in her power to make sure I was safe and healthy as I carried Hannah for as long as I could.
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Helping Those Going Through Baby Loss – We Need Your Help

{Click here to donate.}

**Update! Hannah’s Heart and Love is officially a 501(c)(3) non-profit organization as of September 1st, 2014. But we are still in desperate need of donations both monetary and item donations. Any and all support is so greatly appreciated.

Losing our first and only child was one of the hardest things we have ever had to deal with as a couple.  It was full of heart ache, confusion, sadness, anger, and so many other emotions that making a list is nearly impossible.  When we first received the news that Hannah had some things that would make her chances of survival slim, we were lost.  What made this even harder is that there was really no where we could turn.  During the time from when we found out and even after she had passed away, there seemed to be a general lack of knowledge and support for us to turn towards.  Of course we had the support of our family and friends, but there were minimal resources available to help us.
Losing Hannah created a whole list of things that we now had thrown at us and didn’t know how to handle.  How do we handle such grief?  How do we explain ourselves to people?  How do we go home from the hospital with empty arms?  How do we plan a funeral and how do we pay for it?  This is just a few of the things that started going through our heads.  We had no answers, no where to look for answers and were forced to start working on these things on our own. 
Before we lost Hannah, we could never fully understand what it is like to lose a child.  We didn’t realize how real and painful this is.  There is a general lack of education and conversation about this topic.  People do not have a true understanding of everything that this tragic situation brings with it.  Many people, it seems just assume it all just goes away.  They think that people just move on and that it’s like nothing ever happened.     It is not just a minor thing that passes or fades.  I know this and feel this every time I see a baby or see an outfit or a photo frame or hear about people expecting because I know that at the end of the day, we had to go home without our baby.  The pain that we feel every day is absolutely real.  Our daughter is absolutely real. 
It is because of all of these reasons that we decided that we wanted to start Hannah’s Heart and Love.  The idea is to create a non-profit whose goal is to help families through the tragedy of baby loss.  With Hannah’s Heart and Love, we want to be able to provide aids and resources for the families who have lost.  We also want to provide “recovery boxes” to help the new mommy who is on the mend.  Finally it is also our goal to raise awareness and to educate people that baby loss is real and that it is not just something that will go away with time. 

In order for us to be able to help others, we need your help.  We are currently in the process of getting this non-profit off the ground.  The money that we are hoping to raise will be to help us pay for all of the fees and costs associated with starting such a venture, as well as used to help create packages and print materials to be used to help spread the word, educate people, and get our resource into the hands of those in need.  We have gone through this tragedy, but we don’t want our loss to just be the end of things.  We want to be able to take this bad experience and use it to help others.  Please help us to bring support, healing, and education to the people who need it.  We thank you in advance for your support. 

Losing our first and only child was one of the hardest things we have ever had to deal with as a couple.  It was full of heart ache, confusion, sadness, anger, and so many other emotions that making a list is nearly impossible.  When we first received the news that Hannah had some things that would make her chances of survival slim, we were lost.  What made this even harder is that there was really no where we could turn.  During the time from when we found out and even after she had passed away, there seemed to be a general lack of knowledge and support for us to turn towards.  Of course we had the support of our family and friends, but there were minimal resources available to help us.

Losing Hannah created a whole list of things that we now had thrown at us and didn’t know how to handle.  How do we handle such grief?  How do we explain ourselves to people?  How do we go home from the hospital with empty arms?  How do we plan a funeral and how do we pay for it?  This is just a few of the things that started going through our heads.  We had no answers, no where to look for answers and were forced to start working on these things on our own. 

Before we lost Hannah, we could never fully understand what it is like to lose a child.  We didn’t realize how real and painful this is.  There is a general lack of education and conversation about this topic.  People do not have a true understanding of everything that this tragic situation brings with it.  Many people, it seems just assume it all just goes away.  They think that people just move on and that it’s like nothing ever happened.     It is not just a minor thing that passes or fades.  I know this and feel this every time I see a baby or see an outfit or a photo frame or hear about people expecting because I know that at the end of the day, we had to go home without our baby.  The pain that we feel every day is absolutely real.  Our daughter is absolutely real. 
It is because of all of these reasons that we decided that we wanted to start Hannah’s Heart and Love.  The idea is to create a non-profit whose goal is to help families through the tragedy of baby loss.  With Hannah’s Heart and Love, we want to be able to provide aids and resources for the families who have lost.  We also want to provide “recovery boxes” to help the new mommy who is on the mend.  Finally it is also our goal to raise awareness and to educate people that baby loss is real and that it is not just something that will go away with time. 
In order for us to be able to help others, we need your help.  We are currently in the process of getting this non-profit off the ground.  The money that we are hoping to raise will be to help us pay for all of the fees and costs associated with starting such a venture, as well as used to help create packages and print materials to be used to help spread the word, educate people, and get our resource into the hands of those in need.  We have gone through this tragedy, but we don’t want our loss to just be the end of things.  We want to be able to take this bad experience and use it to help others.  Please help us to bring support, healing, and education to the people who need it.  We thank you in advance for your support. 
 
 

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