Tessie and Noah's Story, by their Mama

written by Kim Jackson

In the beginning of 2013, I decided that I wanted kids and I was done waiting for "Mr Right". I am a pediatrician and was so ready to have a baby. I went through IUI with donor sperm and amazingly got pregnant on the first cycle. I could not believe it. The pregnancy hormone numbers were not doubling as they should and the doctors were concerned that I would lose the pregnancy. Somehow even at that point I knew it was twins. I had an ultrasound at 4 weeks, and they said everything looked great with my 1 baby, and I should come back in 3 weeks for another us to make sure everything was good given the hormone levels. I believed them that there was one baby for about 2 days, then the feeling crept back in that there really were 2 babies in there.  

At 7 weeks the tech said "Oh my gosh, there are two heartbeats!"  I responded, "I knew it." She was so taken aback! I was ecstatic, wanted to run right out and buy 2 of everything. I was a little scared of how I was gonna manage being a single mom to two babies, but the excitement far outweighed the fear. I had 5 blissful weeks to plan for and dream about being a mom to twins before the rug got pulled out from under me. 

I will say that like knowing there were two, I had a feeling that something was wrong as well. Every week between 7 and 12 weeks when I saw my OB my heart was in my throat until they said they were both doing well. 7/31/13 I went to a dating/nuchal fold ultrasound. The tech seemed really annoyed that my bladder wasn't full enough. She said she couldn't get a good look at one of the babies because of that. She left and the Maternal Fetal Medicine doctor came in. He took a brief look at both the babies and then told me that baby b was perfect, but baby a had anencephaly and would not survive. He said it with so little compassion that I thought he was joking at first.  He suggested selective reduction, and continuing the pregnancy as a singleton pregnancy.

My world shattered. I was broken, I puked in the parking lot. Somehow I got myself home and into bed. I spent the next 2-3 days curled in a ball in my bed sobbing. I am ashamed to say that I felt like I was carrying a dead baby. Luckily I have the best OB in the world and at my next appointment she made me look at the ultrasound screen,  saying, "They are both still your babies". One look at them play together and I fell in love all over again. My baby was perfect, even if she wasn't. 

I spent the rest of my pregnancy treasuring every movement, and two babies can make a lot of movement! I eventually found out A was a girl who I named Theresa Mackenzie ( though have always called her Tessie) and my healthy B was a boy who I named Noah Matthew. Noah was up top and Tess was on the bottom. Every ultrasound I saw them kicking and punching each other. I had many many ultrasounds, and unfortunately because Tess had anencephaly, the techs tended to do a quick check of her heartbeat and then ignore her. That broke my heart every time. It took me a while to speak up and tell them that that was not ok. This was the only time I would have with her. I needed to see her. I needed pictures of her. I knew the pictures wouldn't look "normal", I didn't care. 

I met some wonderful people through perinatal bereavement and hospice who helped me make memories I could keep forever. I recorded both of their heartbeats from an ultrasound (I was terrified I might lose Noah too). I bought her outfits I wanted to put her in. I had a shower with gifts for Noah and books to donate to the clinic I work at for Tessie. I made plans for a friend of mine who is a photographer to come take pictures of her, and for her to be baptized by a priest who is a family friend as soon as she was born. My cousin made both of them beautiful preemie sized christening outfits. 

At my 35 week ultrasound they noticed that Noah's growth had slowed a little and plans were made for elective cesarean section for the next week. The day finally came to meet my babies! On 1/13/13 at 1044 and 1045 they were born. Tessie was delivered first, and cried immediately. When they brought her to me she was an awful shade of gray and I didn't think she would last long so I asked them to get her ready and get her baptized right away. Noah was delivered and was perfect, though slightly cold. 

I got to the recovery room and they had waited for me to baptize him. Tessie looked so much better. 

She was pink and crying and hungry!!  The little baby who the specialist had told me would do nothing nursed immediately and knew just what to do (better than her healthy brother). I had friends and family there and after she ate we passed her around. I wanted as many people to hold her as possible. I wanted people to know her.

That night when it was quiet my sister stayed with me. We took turns holding her through the night. At 1130 my sister woke me terrified because Tess was blue. I held my baby and kissed her and begged her to fight a little longer. I didn't want their birthday to be the day I said goodbye. My little fighter was awesome. Within a few minutes she was breathing comfortably again and back to pink. The next day more people came to meet her. I held her and Noah together as much as I could. She was never put down. She had three more of the apneic spells. At about 530 pm my little girl peacefully took her last breath. I held her and Noah and cried. I thanked her over and over for fighting as hard as she could. It killed me for them to take her away 4 hrs later.  

I had 2 more days in the hospital, and spent them holding on to Noah. Struggling to breastfeed him and crying. I brought him home and it felt so wrong to only have one baby. Two days later Noah ended up back in in the NICU for jaundice and r/o sepsis. I was a mess. I felt like I might lose him too (though in my rational brain I knew he was not that sick).  He was in for a week, in the middle of which I had to go pick up Tessie's ashes. People kept asking when I was going to do Tessie's memorial. I could not handle it at that time. 6 months later I finally did and it was perfect. It was a celebration. It was not sad. There were still so many people who cared about her. 

After the memorial life settled into a new normal. I miss my girl everyday, but I am able to function most days. Some days the absence of her nearly knocks me over. Noah lights up my world, he learns something new nearly everyday. Sometimes those milestones are a giant reminder that he should have his sister here to do it with him. I hate that he won't have his playmate to grow, learn, fight and get in trouble with. 

Noah and Tessie turned one in January. Tess was included in his birthday celebration. It was a happy day, though my heart broke a little when we were singing happy birthday and I whispered her name to myself. I am working to balance grieving Tess and loving Noah. Noah will always know his sister existed and was loved. His third clear word was "Tess" and his snugly is the monkey with Tessie's heart beat in it. His face erupts into the best smile every time he hears her heart beat! I don't ever want him to believe that he is not enough though. He is amazing and smart and at 15 months so sweet and caring. I still believe that part of Tessie's reason for existence was to make sure Noah got here safe and sound, and she continues to watch over him even now. 

(Noah at his birthday my wonderful photographer friend added in the butterfly to represent Tess).

Tess has changed me. I have done things I never thought possible. I collected more than 300 books to donate in her name. I have given another loss mama the gift of beautiful pictures of her sweet angel. I have become a poet. My biggest accomplishment is that I have written a children's book about Tess and Noah, and a good friend of mine did the illustrations. It's called Two Little Monkeys.  

She will never be forgotten. Not if I can help it!

Hannah’s Heart and Love

by Heather Kimble

Today I’m going to share a little bit about the non-profit I started, along with my husband, called Hannah’s Heart and Love. But before I get into that, I want to share a little bit of our story leading up to the start of Hannah’s Heart and Love.

At our baby’s routine 20 week anatomy scan it was discovered that our baby had many different anomalies and was instantly labeled “incompatible with life.” We were told that we should terminate our baby asap. Termination was suggested because of the health risks to me. However, we refused because we do not believe in termination. We chose to carry our baby for as long as she lived and I was physically able to.

Our baby was carried with nothing but love. We cherish the short time we had with her. On December 23^rd, 2013 our daughter, Hannah, was born still in her 24^th week. She weighed just 1lb 3oz and was 10in long.

After Hannah passed away, my husband and I both knew we wanted to do something in Hannah’s honor to help other baby loss families. We weren't sure exactly what that should be, but we knew God would guide, direct, and give us an answer. And He did. The answer was given in February 2014 and by October 2014 Hannah’s Heart and Love was officially a 501(c)(3) non-profit.

The mission of Hannah’s Heart and Love is to provide resources, support, and items to moms, dads, and families that have lost a baby through miscarriage, ectopic pregnancy, stillbirth, and infant death. Hannah’s Heart and Love also provides resources, support, and items to moms that choose to carry their baby after receiving a fatal in utero diagnosis. Hannah’s Heart and Love wants to raise awareness and educate the community about baby loss through miscarriage, ectopic pregnancy, stillbirth, and infant death.

Here are the services Hannah’s Heart and Love currently offers:

Resources – Offering an extensive list of resources for all types of baby loss and carrying to term including keepsakes, websites, funeral memorial help, ideas for pregnancy and after birth, websites, books, songs, versus, blog posts from baby loss families, and more helping moms, dads, and families of baby loss navigate through this heartbreaking journey.

Support (Local) – Creating a safe space for moms and dads of baby loss to come together in order to express their feelings in an understanding and judgment free environment. Providing a local sense of community that promotes healthy grieving and mourning. Sharing and creating local in-person events for moms, dads, and families of baby loss, as well as, including the local community to raise awareness.

Support (Worldwide) – Providing information about online and in-person support groups for moms, dads, and families of baby loss. Sharing information about events that are happening within the baby loss community, both online and in-person, that promote healing.

Recovery Boxes – Supplying recovery boxes to moms of baby loss that focus both on her physical and emotional needs. These recovery boxes are providing a sense of comfort and let these moms know that they are not alone. Items including in these recovery boxes include candles, pads, tissues, snacks, books on baby loss, and much more.

In addition to these services my husband and I also speak at various events and to groups. We share our personal story, information about Hannah’s Heart and Love, and bring awareness and education. 

We have met many women who have a friend, sister, or relative lose their baby. These women were not only heartbroken for their friend, sister, or relative, but were desperate to know how to be supportive and not cause any unintentional pain and hurt.  At every speaking engagement we provide a packet for each attendee. Included in this packet are resources on how and what to say to a bereaved mom and dad. We also include an article on the rights of a bereaved mom and dad. We put together a short video about baby loss that we show attendees at these events and online.

   

 It is our hope and prayer this video helps others really begin to understand how devastating the loss of a baby truly is. We are so honored and grateful to the parents who shared the images of their precious babies for this video

Through something tragic God can create good things and we wanted to use our journey of baby loss to help others. Our daughter Hannah was only here for a short time but she has inspired so much good.

 ~ ~ ~

Heather Kimble lives in the Philadelphia area. She is married to her best friend, Jason and is mommy to Hannah Sue Kimble. Hannah is her only child. Heather carried Hannah after receiving a fatal diagnosis and was told to terminate. Heather was told to terminate based on the serious risk to her own personal health. She doesn't believe in termination and chose to carry Hannah with love. Hannah passed away and was born sleeping on December 23rd, 2013. Heather and Jason treasure every moment they had with Hannah during pregnancy and after delivery. Hannah has inspired a nonprofit started by her parents to help others and to help break the silence by sharing their journey of baby loss.

Heather is the Co-Founder and President of the 501(c)(3) non-profit Hannah’s Heart and Love. Hannah’s Heart and Love was inspired by their daughter Hannah to help others and to help break the silence of baby loss.

www.hannahsheartandlove.org www.facebook.com/hannahsheartnlove twitter @hannahheartlove instagram @hannahsheartnlove

Loving Lily

by Kellie Soper

I miss Lily. Every second of every minute of every day. When I think about the fact I have not held my baby daughter in over five months, I almost want to laugh. I mean, it's beyond absurd when you really think about it. When you think about how much a five month old needs their mother and when you think about how much a five month old needs to be held...And I have not held her in over five months. Absurd.

I miss her. Every single day. Some days are much harder than others. Some days there is nothing that can ease my weary soul that longs to be with my daughter. On these days, I think back to her funeral and strangely, how much peace I felt that day.

Total peace. I am sure that sounds so weird. And if you would have told me the months leading up to her birth that I would feel peace at her funeral I would have thought you were crazy.

But I did. Maybe it was the pain meds. Maybe it was the sleep deprivation, but I didn't really cry at her funeral. I cried when she left my arms at the hospital. Just before her funeral I was sobbing over her as they closed the casket. After her funeral I wept as they placed her in the ground. 

But during her funeral, I felt a tremendous peace. I look back on that moment and I smile because to me, her funeral marked one of the most important accomplishments of my entire life. It was the hardest trial I have ever faced, but carrying Lily to term is the one thing in my life I know I did right. I can look back to that day and smile because I know with 100% certainty she is in Heaven. As much as my arms ache without her, I am beyond grateful I get the chance to miss her. Loving her has changed my life and made be a better wife, mom, sister, friend. She has made me a better everything.

This was read at Lily's funeral. The first part was adapted from something a dear friend shared with me a few weeks after our diagnosis. The second written by me about what it really means to love Lily. My words are still inadequate, there are no real words to describe this love for my sweet Lily. She has stolen my heart forever and I will spend the rest of my life missing her, loving her, and hoping to meet her in my dreams.

To Love a Person - Adapted from Kathleen Dean Moore

What does it mean to love a person? 


To love - a person - means at least this:


One. To want to be near her, physically.


Number two. To want to know everything about her - 

her story, her moods, what she looks like by moonlight.


Number three. To rejoice in the fact of her.


Number four. To fear her loss, and grieve for her inquiries.


Five. To protect her - fiercely, mindlessly, futilely, and maybe tragically, 

but to be helpless to do otherwise.


Six. To be transformed in her presence - 

lifted, lighter on your feet, transparent, 

open to everything beautiful and new.


Number seven. To want to be joined with her, 

taken in by her, lost in her.


Number eight. To want the best for her.


Number nine. Desperately.

Loving isn’t just a state of being, it’s a way of acting in the world. 

Love isn’t a sort of bliss, it’s a kind of work, sometimes hard, spirit-testing work. 

To love a person is to accept the responsibility to act lovingly toward her, 

to make her needs my own needs. 

Responsibility grows from love. It’s the natural shape of caring.


Number ten. 

To love a person is to accept moral responsibility for her well-being.

What does it mean to love Lily?

It means everything on this list and so much more.

It means knowing that labor will hurt and you go through with it anyway 

even though you don't get to keep your reward.

It means knowing that your heart will be broken for the rest of your life, 

but holding her for even five minutes makes up for it.

It means watching her lift her big brother off your belly 

with her amazingly strong kicks.

  

It means you will be filled with awe, wonder and sorrow 

as you watch your belly dance before you go to sleep every night.

It means you might not get any sleep at night 

because Lily wants to dance all night long and that's totally okay with you.

It means you never knew you could love 

someone so much before you even meet them.

It means your heart will be so full when you see her 

with her brother's chipmunk cheeks.

It means if you had to...you would do it all over again 

because those brief minutes held more love 

than a whole lifetime does for some.

It means you didn't know it was possible 

for your heart to grow in so much love for your husband 

through honoring your daughter.

It means memorizing every single sweet and perfect detail 

so you can meet her in your dreams.

It means you will fight and defend her right to life 

until your very last breath.

It means that you mourn for your son 

who doesn't have his best friend to grow up with, 

but also rejoice in knowing the special connection 

he will have with her in Heaven.

And most importantly, 

it means you will never be the same person again, 

for we are the mother and father of a saint, 

and we walk with one foot on earth and one foot in Heaven, 

until we meet our beautiful girl again.

 

~ ~ ~

Kellie Soper lives in Arizona and is wife to her amazing husband, Jason. Together they have two beautiful children, one on earth and one sweet, perfect soul in Heaven. Ted is a wild, silly, and rambunctious toddler. Their sweet Lily Frances was born sleeping on November 12, 2014. They learned at their 18 week ultrasound that Lily had a fatal neural tubal defect the doctors said was "incompatible with life." Kellie and Jason both knew Lily was not a "decision", but their precious daughter and they believe her life was of value, no matter what. She carried Lily with love for 42 weeks and 2 days. They miss her every single day, but are grateful for the honor and privilege of being her parents. You can read more about their family on Kellie's blog, Life and Love.

Myths and Facts of Neonatal Organ Donation

By Bethany Conkel

Two weeks ago, in honor of National Donate Life Awareness Month, I shared how neonatal donation has impacted my life and how it has allowed my son to have a lasting legacy. Today I want to talk about some of the myths and facts surrounding neonatal donation options.

Before I start, I want to be clear on one thing: I think each and every life has intrinsic and inherent value. Each one of our precious babies has had an impact on the lives of others and this world. I do not believe donation makes a life “more valuable,” nor do I believe that families who chose to donate are “better” in any way. I do, however, believe that donation can add an extra layer of meaning to a life that is brief and that donation is one way to create a lasting legacy for our babies. I also believe that families should be given the choice to participate in donation, and then supported equally regardless of what they decide about donation.

With that said, I would also like to point out that the world of neonatal donation has been growing and advancing in big ways over the past few years. What was available ten years ago is much different than what was available five years ago, and that is much different than what was available two years ago, and that is even different than what is available NOW. So, if you read something and say “that’s not what I was told”, you are probably are correct, that wasn’t what you are told, but there is a good chance things have changed.

Myths and facts of neonatal donation:

Myth: My baby will be alive while the surgery takes place, or my baby will be in pain if they participate in donation.

Fact: A recovery surgery only takes place AFTER a baby has passed way and their heart is no longer beating. Neonatal donation NEVER takes place while the baby is still alive. Your baby will not feel any pain if they participate in donation.

Myth: My baby will need to be taken to the surgery moments after they pass away.

Fact: In neonatal donation situations, most of the time there is a window of time before a recovery surgery would need to take place. Often you could have anywhere from 45 minutes to 12 hours with your baby after they pass away before a recovery surgery would need to take place, depending on what is being donated.


Myth: Even if my baby doesn’t need to go for surgery right away, I will still lose time because I won’t get to see them again after the surgery.

Fact: In most cases, if the family desires, arrangements can be made with the recovery team and the hospital to have your baby brought back to you after the surgery so you can continue spending time with your baby and making memories.

Myth: my baby would not qualify for donation because….

Fact: Yes, it is true that there are qualifications (weight, gestation age, when death occurs, your baby’s condition, the organ procurement organization that is near you, your delivery hospital, etc.) to participate in any form of donation but, due to recent developments in neonatal donation:

A) In some cases, organ/tissue donation for research may occur as early as 28 weeks gestation. In some cases, organ/tissue for transplant may occur as early as 36 weeks gestation.

B) There is no minimum weight requirement to donate to research.

C) Babies with a variety of conditions including (but not limited to): anencephaly, acrania, trisomy 18, and hypoplastic left heart syndrome can donate to research and, in some situations, transplant.

D) The same exact process is used to recover organs/tissue for transplant as for research.

Myth: The only type of donation that “really helps” is organ or tissue donation for transplant.

Fact: Organ donation for research is just as important as organ donation for transplant. Donation for research is also the most viable option for most situations. Often researchers are using gifted organs or tissue with hopes of curing pediatric illnesses. In many cases, neonatal organs produce enzymes not found later in life, so these gifts are priceless from the research perspective.

Myth: My (_____) told me donation wasn’t an option, and it must be true.

Fact: Due to the fact that things are changing continually in the world of neonatal donation, many times doctors, nurses, genetic specialists, other loss moms, and even some employees of organ procurement organizations are not familiar with the most CURRENT options for neonates. If you would like to participate in some form of donation, but were told nothing exists, please be persistent; do not take the first “no” as a final answer.


To learn more about neonatal donation please visit Purposeful Gift.

Did today’s article make you think of a question about neonatal donation? Feel free to chime in below with your questions, send a private message to All That Love Can Do, or contact me via Purposeful Gift. I would be more than happy to answer your questions.

Was your baby able to participate in neonatal donation? I would love to hear from you. Please comment below or contact me via Purposeful Gift.

If you are still pregnancy and considering participating in donation and would like help through the process, contact me via Purposeful Gift. I would be honored to walk you through the process and offer support.

~ ~ ~

Bethany Conkel lives in Ohio and is married to her wonderful husband, Eric. She is the mommy to two amazing children – one who is in heaven, the other here on earth. Bethany carried her precious son, Amalya Nathaniel (meaning: “work of the Lord”, “given by God”) to term after receiving the diagnosis of anencephaly when she was 11 weeks pregnant. Amalya lived for 1 hour and 20 minutes before taking hold of the Lord’s hand. After he passed, his liver, pancreas, and whole body were donated to scientific research. Bethany has since created a website about neonatal organ, tissue, and whole body donation called Purposeful Gift to help other families explore the option of donation. She is also a certified Birth and Bereavement Doula through Stillbirthday.com and serves with Sufficient Grace Ministries.

Emily's Story, by her Mama

written by Brittany Thomas

I found out I was pregnant with our second child on July 7, 2014. It wasn’t really a shock for my husband and me, because I had no problems getting pregnant with our son a month after stopping my birth control. I was already considered high risk because I had pre-eclampsia with my son. So I was going to regular appointments. At first we thought I was having a routine pregnancy. At every ultrasound, the baby was growing as it should have been. 

At sixteen weeks, we found out it was a little girl, our little Emily Claire! I was over the moon excited. However, the happiness was short lived. 

The maternal AFP signaled that I was high risk for Trisomy 18. My world stopped turning when I heard my ob say the words “incompatible with life”. However, I had already decided that I would continue on with the pregnancy. I remember saying to my husband “terminating the pregnancy wasn’t an option. She didn’t choose this. She was handed this deck of cards. She deserves every chance in the world to fight”. Further testing was done and it said the first test was wrong and she did not have Trisomy 18. My excitement came back!

At eighteen weeks, we thought everything was fine with her anatomy scan. The ultrasound tech seemed to be having a hard time finding all of the chambers of her heart. I didn’t think anything of it. My ob’s office does transvaginal ultrasounds to check the cervix and she chose to check the heart this way. She told me that we could check again at the next ultrasound. I went on my way came back for the next ultrasound. She didn’t say anything and I thought it was fine.

At twenty-nine weeks, I had my first non-stress test. She was non-reactive. The ultrasound tech told me that was due to her being so small. Since the test was non-reactive, I would have my first biophysical profile done. The tech that did this, kept having me get up and move around trying to get Emily to move around. She didn’t tell me at first what she was looking for. After the third time of getting up and walking around, she told me she was having a hard time visualizing all four chambers of her heart. All of the previous images she had taken had already been sent to the doctor. She left the room to go talk to the maternal fetal medicine specialist. After what seemed like an eternity the doctor entered the room.

He came in and told me that my daughter had a rare congenital heart defect called hypoplastic left heart syndrome (HLHS). He said that he didn’t know if it could be fixed but it was very serious. He also told me that she had fluid around her abdomen. I also had very high levels of amniotic fluid. He referred me to Cincinnati Children’s Hospital and University of Cincinnati Medical Center for further testing and care. From twenty-nine weeks to delivery, I practically lived at my home ob’s office and in Cincinnati.

At my first appointment in Cincinnati, more problems were discovered. At my first ultrasound, they found a congenital diaphragmatic hernia (CDH). The fear with this was that her stomach, liver, and intestines had encroached on her lungs and they weren’t fully developed. At this appointment we also compounded gestational diabetes on top of it. The maternal fetal medicine specialist wanted a fetal MRI done to get a better look at her heart, lungs, and diaphragm. Well this was an issue for me because I’m claustrophobic. But I knew it had to be done for my little girl.

After all the testing was said and done, we got the final diagnosis. HLHS, CDH, esophageal-trachea fistula, and possible scoliosis. But we were under the impression that what was wrong could be fixed. The hernia wasn’t a true hole, only weakened. This was good, because her lungs were able to fully develop. At this appointment, I was given the news that I would have to relocate to Cincinnati at thirty-six weeks in case I went into labor or something was wrong with her. During the intervening weeks, I went to appointment after appointment after appointment. 

With the proper diabetes medication, my fluid and her fluid were under control. She was also growing beautifully. There would be weeks where she wouldn’t cooperate for non-stress tests, but she always passed the biophysical profiles. When we relocated to Cincinnati, things would change. At her first non-stress test, she was non-reactive. No big deal. I had been there done that. But the tech was having problems getting her to move. My test took the entire half hour but she passed. At the next biophysical profile, she wasn’t reacting the way they wanted her too. She wasn’t moving and her heartrate was staying at a constant 150 bpm. The maternal fetal medicine specialist came in and told me and my mother that we would be having a baby that day, most likely within the hour. I begged them to wait so my husband could make it, but that wasn’t the case.

I was transported to labor and delivery, and from there everything happened so fast. I was changed, cleaned, IV placed, consents signed, and wheeled into the delivery room within fifteen minutes. I would go into surgery by myself. My mother was taking care of my son so she couldn’t be in there with me. Everyone was in high gear to get my spinal block in and Emily out. 

I remember them telling me to turn my head and look because she was out and they were taking her into another room. I kind of had a gut feeling then that something was wrong, she never cried. After what seemed like an eternity, I asked if anyone knew anything about my daughter. The nurse anesthetist went and checked and she came back and said all she could see was they had a breathing tube in her. There were too many people for her to see. 

A doctor came in a few minutes later, crying, and told me they weren’t able to save my daughter. They put a breathing tube in her, went to give her adrenaline to jump start her heart, and it came back out her mouth. Her heart never beat. After they cut the umbilical cord, she wasn’t able to survive on her own. She kept apologizing, but there was nothing that could be done. 

By the time I was wheeled out of the operating room, she was bathed and dressed and waiting for me to see her. I couldn’t do it until my husband got there. They allowed my mother and son to come back to my own recovery room and her face was blood red from crying. When my husband and father arrived, I finally asked them to bring my daughter in. She was absolutely beautiful. I never got to see her eyes, but she had a full head of brown hair.

My family and I would spend the next day and a half with her. She was changed into an outfit that I loved and a bow that was too big for her head. But she was absolutely perfect. We would hold her, cuddle her, rock her, and just bond with her.

The day I was discharged was the hardest. A geneticist would come in and tell me, just by looking at her, that my perfect daughter wasn’t perfect. He started listing off things wrong with my beautiful angel. Her eyes were too far apart, the bridge of her nose was too wide and flat, her fingers weren’t formed right, she didn’t have enough fingernails. The list went on and on. It was like putting a knife in my heart. He told me what testing would be done and how long it would take. After he left, I told my nurse I was ready to go home.

One of the hardest things I have ever done would be soon to follow. I had to change her into the typical hospital garb; the newborn beanie, white long sleeve shirt, diaper, and blanket, lay her in the bassinet, and leave her there. Never to see her in natural physical form again.

As of right now, we still aren’t sure what her cause of death was, other than the HLHS. I am hoping that we will be getting the results of the autopsy and genetic testing back soon. But no matter what they tell me, she will always be my perfect little girl. I wouldn’t have ended her life for any reason. She was alive inside of me. I will always treasure those little kicks and wiggles.

Fly high Emily Claire! You are loved and missed more than you will ever know.

An Adventure of a Lifetime

By Jenna Gassew

One thing that I believe many people can relate to is music. I love music. It has a way of bringing me back to a place or time that once was, where I can relive the past.  One such song is Tim McGraw's “Live like you were dying.” I’ve always loved that song, but now it reminds me of my son, Shane Michael Haley, who passed October 9, 2014. The lyrics strike a chord in my heart and leave me in tears but I love it.

He said I was in my early 40's,
With a lot of life before me,
And a moment came that stopped me on a dime.

I spent most of the next days, lookin' at the x-rays,
Talkin' 'bout the options and talkin' 'bout sweet time.

Asked him when it sank in, that this might really be the real end.
How's it hit ya, when you get that kind of news.
Man what ya do.

And he says,
I went sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.

And I loved deeper,
And I spoke sweeter,
And I gave forgiveness I've been denying,
And he said someday I hope you get the chance,
To live like you were dyin'.

These lyrics never hit me so hard until April 10, 2014. That day I received news that my son, Shane Michael, had a fatal birth defect. He was diagnosed with Anencephaly and would not survive outside the womb for long. For a day or two I felt lost, angry, upset, and scared. The day before Dan and I went to the doctors, I had set up our onesies birth announcement to share with friends that we were expecting, and now I was told that my baby would not survive. Instead of buying diapers, bottles, and bibs we were now looking at planning a funeral for our only son. My heart wasn’t ready to handle saying goodbye. That day, his diagnosis day, I will never forget. My eyes were heavy with tears and I couldn’t even handle looking at a baby without thinking of losing my own. I remember getting back from the ultrasound only to have to tell Dan the news. I couldn’t even muster up the right words but I told him, “We’re going to have the baby but he won’t make it.” I don’t think Dan was prepared to hear those words because his face flashed white and his eyes looked helpless. He hugged me and we just sat and cried for about an hour. It felt as if a part of us both died that day. We wanted someone to tell us it was going to be okay but in reality we knew we were up for a long tough journey. As first time parents we were ill-prepared to handle such a diagnosis but looking back I think we did the best we could for both each other and our son.

We decided to get away for the next couple days and drove to the shore. I remember how quiet that ride was before deciding that we needed to share with the world how proud we were to be parents of this little baby, regardless of his diagnosis. We knew we wanted him or her to be treated like any other baby, but we also knew our child needed prayers. Dan posted this birth announcement, 

“Jenna and I are happy to announce that we are expecting a beautiful baby in October…We recently learned our baby was diagnosed with a condition called Anencephaly and we are asking for your prayers… We are both extremely proud and thankful that God has blessed us with this baby and we trust in His plan for our lives and the life of our child…Thank you for all of your prayers and support!.” Many of our friends and family offered kind words and prayers, but didn't know that Anencephaly is a fatal birth defect. 

We spent the rest of the weekend just trying to make it to the next moment, while picking each other up.



“How's it hit ya, when you get that kind of news. Man what ya do.” 

It was then that those lyrics hit me harder than they did the day of his diagnosis.
 In a way they kind of picked me up. If our son was going to spend most of his life inside my womb, why not take him to all the places we dreamed of going with him after he was born? Why go on mourning after the diagnosis when he was still very much alive? That’s when we decided we were going to start a journey together, as a family. We created Shane’s bucket-list and our first trip was to Rehoboth beach in Delaware. We then traveled to the Cape May County Zoo in New Jersey. 

Our trips continued and, soon enough, the world began following Shane’s adventures through social media. His bucket-list adventure included trips to the shore, our favorite parks, New York City, Phillies games, Flyers games, and our favorite, Dad’s baseball games. His journey brought more awareness to Anencephaly than we could have ever imagined. His facebook page, “Prayers for Shane”, became his virtual scrapbook page for those around the world to join in welcoming one tiny little miracle.

On October 9, 2014 at 2:25 in the morning we welcomed our little miracle into the world. 

He was baptized into the Catholic faith and spent his whole life surrounded by family. He fought for four long hours and I can tell you my little boy was beyond beautiful. We held him for twenty seven hours after he passed and loved him more with each passing second. I remember looking into his eyes the moment I saw him thinking, “I wish this journey would never end. I wish we had just a few more hours or days to even create some more family memories together.” I knew I could never have enough time with him but how blessed was I to have experienced a lifetime of happiness in four short hours.

As I sit here today on the sixth month anniversary of Shane's birth, I think about the lyrics from Tim McGraw's song and I am thankful that we took our son to so many places and created so many family memories together. That song will forever be the anthem to Shane’s life in my eyes. Tomorrow will be the one year anniversary of his diagnosis and to say that his diagnosis day hasn't changed my life would be a lie. 

This time last year I was scared and upset, wondering how we were going to go on with our son for the following months only to be forced to say goodbye. Tomorrow I go into the day hoping to remind myself that no diagnosis can end a lifetime of love and memories created by our family and friends. I know it will be a tough day, just as it was last year, but I am proud to say that we celebrated every single second of life our son gave us.

Death is inevitable and how we chose to live our life is up to us. Instead of us teaching our son, he taught us that each day is a gift and that there is truly no foot too small that it cannot leave an imprint on this world. I am thankful for not only the four hours that our son gave us after his birth but also for the 39 weeks and four days that he spent kicking, hiccupping, and traveling with us in the womb. Though our pictures may fade, his memory will live on forever. His life was spent in the arms of those who loved him and traveling the world together as a family. He knew only love. 

To my beautiful son:

Thank you for giving your Dad and I a lifetime of happiness and love for the brief time you were here on earth. Thank you for changing our lives for the better and teaching us to live every day to the fullest. We love and miss you more each day. We wish we could just kiss those sweet cheeks one more time. We love you to the moon and back.

Love Always, 
Momma and Daddy

~ ~ ~

Jenna Gassew is from outside Philadelphia, Pennsylvania. She is a graduate of Rosemont College with a degree in Mathematics. She is the mother to a beautiful little boy in heaven, Shane Michael Haley. Shane was diagnosed with Anencephaly at 13 weeks gestation. Jenna and Shane’s father, Dan, decided to create a bucket-list on which they took Shane to various places such as Phillies games, New York City, and Ocean City, Maryland. Shane was born October 9, 2014 and lived for four precious hours where he spent his whole life loved. She continues to bring awareness to Anencephaly in honor of her son. More about Jenna, Dan, and Shane’s journey can be found on  their facebook page, “Prayers for Shane.”