Anne’s Story

Hallie Grace Davis

June 5, 2021-September 8, 2021

I’m an older mom and honestly was not sure for a long time if I would ever have children. When my husband and I married, I was already 37 and just didn’t know if it was in the cards for us. We started trying to conceive within our first year of marriage, since we expected it to take some time to get pregnant. But we were blessed with our first daughter very quickly and I gave birth for the first time at the age of 38 to our amazing daughter Brielle.

We were head-over-heels in love with her, and time moved so quickly that by the time she turned one, I found myself wondering if I should try again and give her a sibling. My husband and I discussed it and due to our age, neither of us was sure what we wanted to do, so we decided to leave the decision up to God and just not actively try to stop another pregnancy. We fell pregnant again within two months and both of us were thrilled! We were shocked and so excited to find out we were having another baby girl! (I actually had a little brother who passed away from cancer when I was 7 and he was 3, so I loved the idea of siblings in general and really got excited about sisters growing up together.)

I had a very healthy second pregnancy at the age of now 40 and a perfect repeat c-section. Due to my age, I got all available genetic testing in both pregnancies, and everything came back low risk. We went into our second daughter’s birth at 39+3 weeks fully expecting an easy birth and a healthy baby. I had a gentle c-section with a clear drape, and I will forever remember the first moment I saw her, my Hallie Grace. I gasped from the amount of love I felt for her, and I specifically remember feeling surprised and overwhelmed because I felt like I have known her for eternity. The anesthesiologist captured that moment in a perfect photo that I will cherish for the rest of my life.

Unfortunately, things went downhill very quickly. Hallie was born with blisters on all of her sweet fingers, her umbilical cord, and one on her upper left thigh. At first, the doctors thought she had just sucked on her fingers too much in the womb, but when they saw the blisters on her umbilical cord and thigh, they were very concerned. I was told she needed to go to the NICU for monitoring and diagnosis, so I got to kiss her and tell her I love her, and I wasn’t able to see her in person again until my spinal wore off 12 hours later. Just about an hour later in the recovery room, the neonatologist came in and said the worst words I have ever heard – Epidermolysis Bullosa (EB). 

We were incredibly lucky that this doctor had seen a case of EB before because it is so very rare. Thankfully, that meant Hallie Grace had the best possible care from the first moments of her life. The care team knew that EB was a skin condition of varying degrees that could create blisters and lesions from the slightest friction or heat, so they immediately found blankets made of soft materials, EB-friendly bandages/wrappings, and covered Hallie in Vaseline and Aquaphor from head to toe. They also knew they did not have the ability to care for or diagnose Hallie properly, so they wanted to transfer her to a facility with a pediatric dermatology department, which they did, just days later.

So, my first few days out of surgery involved very little sleep or care for my own recovery. I did everything I could to get into that NICU as soon as I could once that spinal wore off and I could get the catheter out. I was up for over 24 hours because I couldn’t sleep without holding her and giving her kisses. My love for her was immediate and so very strong. I spent most of those first days in the NICU by her side, nursing her when possible, singing to her, and just telling her how strong she already was. I thank God every day for my husband, who was there by my side through it all, and our parents, who dropped everything to care for our older daughter as long as needed.

On her third day of life, Hallie Grace was medically transported to a more equipped facility about 2 hours away. Luckily, it was very close to my in-laws, so we all went to stay with them as a family and my husband and I could be close to Hallie. This facility immediately did genetic testing to get a more accurate diagnosis, but that could take 4-5 weeks for the results to come back, so the pediatric dermatologist gave her clinical impressions and spent literal hours in the NICU with us, answering all of our questions and helping us learn how to care for Hallie and her very fragile skin. I have never been good with medical stuff, but suddenly, there I was, popping blisters and dressing wounds. It was incredibly difficult to watch sweet Hallie go through it all, but she was a trooper from Day 1 and to this day is still the absolute strongest soul I’ve ever known.

She was so strong that she ate more than her necessary feeds and was strong enough to come home from the NICU after just one week! We stayed in close contact with her pediatric dermatologist and added a ton of doctors to her medical care team. We had a full team in our town along with her pediatrician, who amazingly had seen a case of EB several years ago, a team near her pediatric dermatologist, including an ENT, GI doctor, Wound care specialist, etc, and we even worked quickly to get Hallie into an official EB clinic, where we traveled across the country to have approximately 14 doctors see her over two days!

Her genetic results came back on July 5, 2021, and we were all in shock. Her dermatologist was hopeful that she had a mild case based on how well her skin appeared to heal, but the results showed she had a severe type of Junctional Epidermolysis Bullosa. JEB is the rarest and most terminal type, but one of her genetic mutations had never been seen before, so we didn’t know how it would play out and therefore, we never gave up hope. We got her into a clinical trial and traveled all over to have her seen by the best of the best in the field. She handled it all amazingly well and continued to grow into a very affectionate, loving, smiley baby girl. It hurt her when we held her sometimes, which was devastating as a parent, but we found other ways to connect. She would often lay on a lounger next to us on the couch and we would put our arms around the lounger itself and nuzzle noses. She especially loved when I sang to her, specifically the song “Baby Mine” from Dumbo.

Life was really hard… Every diaper change took at least 30 minutes to an hour due to wound care and we had to do full dressing changes every few days, which took several hours and caused Hallie pain. Because we were expecting her to live a long life and she was still so young, the doctors recommended only Tylenol and distractions, but as time went on, we could tell more of her skin was becoming wounded and she was in more pain. She stopped smiling after my birthday (August 21) of last year, but we thought it was just a phase because we could see some good signs of healing in her skin. She also began to have trouble eating because it was becoming painful for her and she already had two teeth breaking through at just two months old, so she was also beginning to lose weight. Because so much of her skin was wounded at this point, she needed a lot of extra calories to help her heal and we just couldn’t keep up, even on fortified feeds. She also leaked a lot of fluids out of her wounds, so her electrolytes were off and she started to feel worse. We had her on acid reflux medications to help keep blisters away internally, but when we did a swallow study at the end of August, we found that she was aspirating her feeds too. 

Our eldest Brielle was afraid to handle Hallie because she didn’t want to hurt her, but she was also incredibly understanding considering she was just over 2 years old. She helped out where she could and never complained about Mommy and Daddy having to give so much attention to Hallie Grace. Brielle loved her sister from the instant they met, and I will forever be grateful that they got to spend some time together, even if it was unfairly brief.

In the beginning of September, when Hallie was just 3 months old, she started exhibiting some strange muscle-tightening behaviors. We were afraid she was having seizures, so we brought her to the local ER. Hallie was admitted for testing for 4 days and they found that she was not having seizures but was just in that much pain. It broke me. It still breaks me…

Her electrolytes were way off and she was very anemic, so they gave her a few transfusions and together with the EB clinic, a plan was made to have a g-tube placed on September 9 to help her get all the nutrients and medication she needed without having to feed by mouth. They sent us home the night of September 7, but once we got her home, we noticed her breathing was still labored. We spoke to some nurses and they said to watch her overnight and bring her back the next morning if nothing changed.

The next morning, September 8, 2021, when we woke up, we noticed her breathing seemed a little better, but when I spoke to the doctor to give an update, she asked if Hallie was doing better or just getting tired. I panicked. I cried to Hallie to keep fighting and we knew we had to race her back to the hospital. We called on our way and they got us in almost immediately when we arrived. Within seconds of getting into a room in the ER, our beautiful, perfect butterfly coded and transitioned into the angel she has always been. She waited until I took my hand off of her chest to speak to the doctor. I won’t go into detail here because it was way too traumatic, but I will say, I felt peace beyond all understanding as a stood in the corner of that room for almost an hour, crying out to God and my angel brother and praying over my perfect daughter. I have never felt so lost as I do without my Hallie. I believe in my heart that she is at peace and free from pain and that’s all I could ever ask for as her mother. I will gladly sacrifice my pain so that she no longer has to live in pain from that horrible disease.

Epidermolysis Bullosa (EB) is known as the worst disease you’ve never heard of and it is now my life mission to change that to the worst disease we found a cure for, as Hallie Grace’s legacy. We started a nonprofit in her name (called Heroes for Hallie Grace Inc.) to help raise awareness, fund research, and help other EB families in any way we can. I could feel Hallie so close to me for about 6 months after she passed away, but I started to feel her pull away around March of this year. It’s been unbearable. However, on our eldest daughter’s third birthday, we found out that Hallie Grace sent us the most unbelievable gift, a very unexpected little rainbow baby. I am currently 29 weeks along with our little boy, Brielle and Hallie’s baby brother and our final miracle. My husband and I were actively not trying for a baby because our grief was still so fresh and with us being older parents, we figured we might just adopt in a few years. But God and Hallie Grace had other plans and we couldn’t be more thrilled.

Pregnancy after loss is so hard and triggering in so many ways and opposite emotions often exist at the same time, such as joy and sorrow, excitement and anxiety, etc. But I have gotten so many signs from my sweet angel that this little sweet pea is hand-picked by her, and I know he and Brielle will forever have their own personal guardian angel. We are incredibly blessed that this baby is only a carrier of EB and will not be affected by it and that all other genetics and chromosomal analyses came back normal!

Our little guy is due this November, so we thought that participating in this project and taking our maternity photos in the rainbow skirt on the one-year anniversary of the worst day of our lives would be a perfect way to honor all three of our beautiful children. We will release butterflies to send to Hallie Grace in Heaven and thank her for everything she continues to gift us. We love her so much and will forever miss her every second of every day, but we will be forever grateful that we got to hold a real angel in our arms for 3 months and 3 days. She taught us more in that time than we have learned over our entire lives, and she will continue to change the world through her legacy! She is our hero and always will be our Tiny Butterfly Warrior Angel. 

Newborn baby being born by C-section

Hallie Grace and her older stister wear matching outfits.

Anne and her husband hold their two children and smile at the camera.

Close up of the smiling face of Hallie Grace.

Hallie Grace wears a pink superhero cape with a teal H on it.

Anne holds her daughter Hallie Grace and smiles down at her.

Anne holds her daughter Hallie Grace on her chest.

Anne and her husband hold a sign that reads "God knew our hearts needed you" in front of their newborn daughter.

Anne sits with both of her daughters, who wear matching bows in their hair.

Anne wears a white dress and the rainbow skirt.  She stands on a path with greenery on either side.

Anne holds a teddy bear with a floral crown and rainbow skirt.  An orange butterfly sits on the head of the bear.

Anne wears a white dress and the rainbow skirt.    She holds the teddy bear with a rainbow skirt to her face.  They touch noses.

Anne and her husband stand holding their daughter and the bear representing Hallie Grace.

Close up of the floral crown on Anne's head.  An orange butterfly sits on the crown.

Anne kisses her daughter.  An orange butterfly sits on her hand in between them.

Anne wears a white dress and looks at an orange butterfly in her hand.

Anne wears a white dress and the rainbow skirt.    An orange butterfly rests on her pregnant belly.

Close up of Anne, her husband, and their daughter's hands together.  An orange butterfly rests on their daughter's hand.

Close up of the rainbow skirt.  At the bottom sits a teddy bear with a rainbow floral crown and rainbow skirt.

Anne wears a white dress and the rainbow skirt.  Her daughter sits at the bottom of the skirt also wearing a rainbow dress.

Close up of an orange butterfly on Anne's hand.

An orange butterfly rests on Anne's arm.

Anne stands next to her husband and daughter as they all release butterflies into the air.

Anne wears a white dress and the rainbow skirt.  An orange butterfly rests on her pregnant belly as she smiles down at it.

Anne wears a white dress and the rainbow skirt.    Her husband stands next to her holding a picture of Hallie Grace.  Their othe daughter stands in front of Anne wearing a rainbow dress.

Anne wears a white dress and the rainbow skirt.  She holds her pregnant belly and smiles down at it.

Anne wears a white dress and the rainbow skirt.   Her daughter wears a rainbow dress and stands next to her.  Anne holds a teddy bear with a matching rainbow dress.

Read more about Epidermolysis Bullosa here.

Listen to the special song written about Hallie Grace by an artist also named Hallie Grace. Tiny Butterfly Warrior – Single by Hallie Grace

Photos taken by Michael Edde of Beacon Photos.

Find out more about Project Finding Your Rainbow.

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