Through the Dark Valley

by Julie Erickson

When I first learned of Jordyn's fatal diagnosis in November of last year, the perfectionist and workaholic in me took over almost immediately. Though I was heartbroken that Jordyn would not be with us to grow up, I imagined the good that could come of her short time on earth. I pictured building a legacy in her name which included a charity for fetal heart research, a blog to tell her story, and many speaking, fund raising, and mentoring efforts to support those who were hurting in the same way I was. Though I could not save her life, through whatever power I had I needed her memory to be preserved.

A Grieving Mother's Wish List

by Sarah Grandfield-Connors

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.

Fearfully and Wonderfully Made

by Julie Erickson

September 29, 2014 marks a turning point in my life: what was supposed to be a quick ultrasound on that day just as suddenly became a nonstop nightmare. Not 24 hours before, my OB/GYN had detected a faint noise in my baby's heart tones that seemed a bit strange at a routine checkup. She had almost dismissed it and sent me on my way, but at the last second had decided that I should be sent for a scan, “just to be sure it was nothing.” As I left her office that afternoon, she encouraged me not to have fear, as she felt it was likely just that: nothing.

I had an ultrasound only some three weeks earlier, which had gone very well. The tech and I giggled over the first images of my baby, who she had commented looked like a “dancing little gummy bear.” We oohed and aah-ed over the sweet photos with our family. My doctor, in the meantime, had emailed a short note indicating that everything looked great.

Now, here I was again alone in the same room, feeling slightly annoyed at having to squeeze a surprise appointment around my already hectic schedule and also feeling a tad apprehensive. My husband, Mitch, had left town the day before on business, and I was playing single parent for the week to my 1 year old daughter, Hannah. I had decided to go ahead with the appointment in Mitch's absence, as I had been reassured by my doctor's bold statement of confidence, and felt that this would be a mild annoyance at the most and nothing further.

As the teach scanned, and scanned some more, I took some deep breaths and tried to think about the plans for the nursery I was decorating, the oil change I needed to get done, and the run to the bank I had to make before picking up Hannah from daycare. I tend to be an anxious person by my very nature, so anything I could do to pass the time and not fixate was a good thing.

The technician's cheerful demeanor had vanished almost immediately after my appointment began. She fell unusually quiet and I noticed that her brow began to furrow in heavy concentration. Twenty minutes turned into thirty, thirty minutes became forty, and eventually she stood up, breaking the long silence with a brief comment on how she would return after she had spoken to the doctor.

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

The Support of my OB/GYN

The 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.

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

The Story Behind the Giraffe

The giraffe is Hannah's animal. Every time I see a giraffe I think of her. I have the urge to purchase every giraffe stuffed animal I see and every baby item that has a giraffe. I'm able to control myself sometimes and other times I just give in. Most people know the giraffe is Hannah's animal.

Recently, I have been asked the story behind the Giraffe as her animal and how that came to be. To be honest it was completely unintentional and it evolved on its own and it evolved fast. After we received the devastating news for the second time at CHOP, we knew that we wanted to have a 3D/4D ultrasound done. We wanted to have this done when we first found our we were expecting before the devastating news. But now we knew we had to schedule it right away because we didn't know how much time Hannah had left with us on this earth.

We were able to get an appointment for December 19th, 2013 at 1pm in the afternoon. We invited our parents and siblings to come. At this point we weren't 100% sure that Hannah was a girl, but based on the anomalies she most likely was. Jason's parents and sister were able to attend and so was my mom. It was wonderful seeing Hannah on the screen, but unfortunately (except for the back of her head, neck, and ears) we weren't able to see her in 3D. She was positioned with her face in the placenta and facing my back with her legs under her body. That meant we weren't able to see her gender either. After seeing her, seeing her heartbeat, and hearing her heartbeat and multiple attempts to get her to move the session ended. The owners of InnerView Ultrasound were so nice and knew the whole situation and why we were there in Hannah's 23rd week. They offered for us to come back again on January 2nd, 2014 and we quickly agreed. They were aware that something could happen sooner than anyone wanted to admit.

We knew that we wanted a stuffed animal with Hannah's heartbeat inside and now with the fatal diagnosis we wanted to get our mothers each a stuffed animal with her heartbeat for Christmas. I had a strong feeling that we should all pick out the stuffed animals that day and not wait. This was an extremely emotional time, especially for our mothers and they picked out the stuffed animal that would hold their granddaughters heartbeat. They had many cute stuffed animals and all different sizes. Jason's mom picked out an adorable white bunny. My mom picked out a sweet lamb, because that is what she did my nursery theme when I was a baby. Even as I type this I'm fighting back the tears and I'm barely winning. I really liked a pink bunny that I saw, but I didn't want to get it for the slim chance that she wasn't a girl. Then we saw the giraffe. It was adorable. We instantly wanted that one. We were surprised that we were so confident and chose a giraffe. The giraffe is not our favorite animal, but we needed and wanted that one for our precious baby. The giraffe still didn't become Hannah's official animal. We had no intention of it being the giraffe. We had no idea Hannah would have an official animal.

That following Sunday on December 22nd, 2013 we were Christmas shopping and I wanted to make sure we bought a special blanket for Hannah to be wrapped in when she was born (here come the tears again). I wasn't sure what I wanted, but I knew it had to be special and I would know it when I saw it. I personally didn't want to go to a Target or a Walmart etc. (nothing wrong if you choose or chose to, this was just my personal preference. I love Target!). We are lucky enough to have had a small Carter's store open us near us and I wanted to go there. It was so hard walking in that store knowing that Hannah could never wear any of these adorable and tiny outfits. After a few minutes I saw the perfect blanket. It was a swaddle blanket covered in giraffes. I had to get it. It was perfect. Then my eyes instantly went to the security blanket next to the giraffe print blanker. The security blanket was white with a white a giraffe and on the side it read, "Mommy loves me." I had to have them both. I handed them to Jason to buy. I could barely hold back the tears. I couldn't stay in the store any longer and had to walk outside and wait for Jason. I walked a few feet away from the store and just cried. In those moments Hannah's animal officially became the giraffe. We couldn't be happier and we love how special this has become to us and how it happened organically. We didn't need to say a word to our close friend and family. They just knew when Hannah was born the next day and saw the giraffe blanket she was wrapped in and the giraffe security blanket snuggled with her.



Hannah's giraffe security blanket we got her the day before she passed away and was born.

My close friend came to visit me and gave me the cutest TY Beanie Ballz giraffe named Tippy! It's missing one of its ears. It wasn't torn off or anything. Tippy simply didn't have that one. This made Tippy even more special because even though she's not perfect according to the world's standard she's still perfect to me, just like Hannah is. My close friend also gave me a keepsake necklace in memory of Hannah complete with a mommy and baby giraffe for Christmas. To celebrate Hannah's birthday we bought baby giraffes to put on and with her birthday cake. We will use them with her birthday cake every year. I made a Christmas stocking for Hannah with a giraffe and a giraffe patterned heart on it and we will hang it for her every Christmas. The outfit Hannah was buried in wasn't fancy or girly. It was a micro preemie onesie that had giraffes (and other safari animals) on it. I bought the exact same giraffe blanket, that she was wrapped in the day she was born, so she could be wrapped and buried in the giraffe blanket that matched. We included a drawing of a baby giraffe in Hannah's funeral programs too. I couldn't part with the one she was wrapped in at the hospital. Now we each have one. To celebrate Hannah's monthly birthdays for the first year and her yearly birthday every year after that, we use a chalkboard with a cute giraffe sticker on it.

We talked to our close friend and family how funny it is how the giraffe just became Hannah's official animal. We wouldn't have it any other way. Hannah knew her favorite animal from the start.



 

 

 

 

 

The day our world stopped turning

On December 23rd, 2013, our world stopped turning.  We went to our regularly scheduled doctor’s appointment, where Heather was to be checked for signs of mirror syndrome and the baby was to be checked for heart beat.  This was not our first such appointment, so we knew how they go. After a few minutes in the doctor’s office, we knew something was wrong.  The Doctor kept checking for a heart beat on her mini Doppler, but was unable to find the sound.  She switched to her ultrasound machine to see if she could visually find the heartbeat.  After only a few seconds, the doctor determined there was none.  She sent us immediately to Maternal Fetal Medicine for confirmation.  They took us right in, only to confirm the worst news we could expect to hear.  Our baby had passed away in utero sometime that morning.

The hours that followed this were a whirlwind.  Our parents met us at the hospital to support us.  Afterhours of waiting, they took Heather back for an emergency C-Section.  The hour in the operating room felt like days.  After the baby was born, the doctor baptized the baby on the spot.

Our daughter, Hannah Sue Kimble, was born and passed away on December 23rd, 2013.  She weighed just 1 pound and 3 ounces, and was 10 inches long.  She will receive a birth certificate.  There was no warning, and no words that can express the difficulty or the pain we have gone through and are going through. 

The only thing that we have been able to feel that is positive in this situation is that the Hannah did not suffer and that we were not forced to make any difficult medical decisions. We know that Hannah is in heaven with her Savior and that she has been made whole. 

Our CHOP Experience

Sunday, December 8th, 2013, the snow began to fall.  Our appointment for CHOP was Monday morning.  As the day progressed and the weather appeared to be worse then expected, we booked a hotel room for Sunday night in Philadelphia.  We didn't want anything to stand in the way of our opportunity to get what we hoped could be better news.

© The Children's Hospital of Philadelphia.

Monday morning, we arrived at CHOP  It was only a few minutes from the hotel we booked, so getting there was easy.  We went up to the floor we were supposed to and sat down with an intake person.  She got all our information and gave us our schedule for the day.  We had a Fetal MRI scheduled for first thing in the morning.  In the afternoon, we were to have a fetal EKG and an ultrasound.  We were also to meet with a genetic counselor.  After all of these we would meet with the doctors and discuss what could be done, if anything. 

After the Fetal MRI, however, our day shifted.  The people at CHOP started working more quickly and started changing our schedule in an attempt to get us through more quickly,  We don't know for sure why we got the preferential treatment, but we did.  The workers at CHOP were very nice, and very understanding.
 
Finally after all of out tests, we sat down with a doctor to go over the results.  We were nervous and anxious to hear if there was anything that had been missed or overlooked.  We knew that the news they gave us could be no worse then what we were already aware of.  The doctor then told us what they now knew,  Unfortunately, the doctors found nothing different then what the prior doctors had diagnosed. 

The list of conditions:
1.) Cystic Hygroma
2.) Hydrops
3.) A Transvalved heart with an underdeveloped left side.
4.) Under-developed lungs and kidneys
5.) Low amniotic Fluid
6.) Undeterminable genetic issues. 

The overall determination was that the baby is incompatible with life.  The doctor also recommended termination because of a 10% risk of mirror syndrome.  She said that while they generally do not recommend termination, they felt the severity of our babies situation would yield no positive outcome and since it created a 10% risk to me it was the best solution.  We decided however that we would bank on the 90% of no risk to me and give God a chance to heal our baby.  If we terminate our baby has no chance of being healed.  We also felt that even without the health issues, babies are not born at 21 weeks and are able to live.  For that reason alone, we felt we should continue the pregnancy to at least a point that the baby could survive if it were healthy.  We now had a new mission.  Make the most of the time we have with the baby, and pray for a miracle. 

The worst news of our lives...

So, we went into our 20 week ultrasound on December 5th, 2013 thinking that we were going to find out the sex of our baby.  At that moment, our biggest fear was that we would not be able to determine the gender and we had a party planned for the 15th just a week away to reveal the gender.  We had our 2 envelopes ready so that the tech could write the gender down.  One for use and one for our favorite cupcake baker.

 

The invitations we designed for Baby Kimble's gender reveal party.

We arrived at the ultrasound on time and waited patiently for our turn in the ultrasound room.  We were so anxious to see the baby.  Once we got in the room and the tech started, things took a dramatic turn.  The tech began scanning and became very quiet.  She didn't point out much of the baby or any of the things that had happened at the prior ultrasound.  After a few awkward minutes of her scanning and asking some off-putting questions, she declared "Something is wrong, I need to get the doctor.  I am sorry to be the one to tell you this."  We then waited for what seemed like an eternity for the doctor.  We were saying to each other, "what could it be?"  It is at moments like this that your mind races through the options.  When the doctor finally came in, the information she presented to us was not even in the realm of what we had thought.  Instead of saying that it was something like a birth defect or a possibility that the baby would have some sort of mental disability, the doctor explained that in here opinion there was essentially no scenario in which our baby would survive beyond birth, at best.  We were floored.  The shock that set in can not be described at all.  At this point the doctor went through a variety of medical explanations and explaining that the best option for us was termination.  We just stared at her blankly.  After she was done, we went and sat in our car, uncertain of what to do next. 

Our OB called shortly after we were in the car.  I am not sure how long we had been sitting there.  We went in to see the OB that very moment, as her office was in the next building over.  We hoped to go in and find out our options and see what could be done.  Unfortunately, that was not exactly what happened.  When we went in, the doctor said, "So this must be some difficult news."  From there she went on to explain the baby would not make it and that because of this, the best option would be immediate delivery to avoid any potential risks to my health.  She wanted us to come in just 4 days later to deliver the baby so that the pregnancy would be terminated.  At first, we didn't even realize what she was offering us.  Once it all clicked, I said that I was not comfortable with this option.  The doctor continued to try to convince me, and then told me to go home and think about it.

I immediately decided that this option was not for me. It goes against everything I believe in.  When we got in the car, that was the first thing I said.  But now what do we do next?  We went to my parents that night and explained the information we had received.  Jason called his mother after the appointment to tell her what we now knew as well.  Everyone was as devastated as we were.
 
Friday, the day after the ultrasound, we went to Jason's parents house.  My mother came with us.  We just wanted to be with family and get some support. When we arrived, Jason's mother said that her friend Judy wanted to come over and talk to us.  Judy is a nurse at Einstein Medical and her friend is very high up at Einstein. After speaking with them both, we were referred to CHOP.  We made a call at 4 p.m. to see about getting an appointment.  By 5:30 pm., we had an appointment for Monday morning.  We at least had a little hope at the moment.