‘We got the horrifying call in the middle of the night: ‘She’s bleeding from her mouth and we don’t know where it’s coming from and can’t stop it.’: Mom shares grief journey after losing twin to rare heart defect, DiGeorge Syndrome

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“The summer of July 2014 we decided to start trying for a sweet child. Jeremy had surprised me with an anniversary trip to Ruidoso, New Mexico. While there, wine nor champagne seemed to taste right. I knew something HAD to be going on with me, I LOVE a good glass of red wine and I couldn’t hardly stomach it. Surprisingly, a day after our first wedding anniversary, I took a test while my sweet husband was sleeping and it was a positive! I was shocked to say the least. This was only after two months of ‘trying’ to conceive. God had granted what our hearts had longed for and what we had prayed for.

I kept it a secret as I wanted a special way to tell him our prayers had been answered. So, I went to Hobby Lobby and picked up some bright orange paint, a camouflage onesie, an orange feather bow, and a toy bow and arrow with a big poster board. He is a big hunter so I had to incorporate that in some way. The sign read ‘Baby B which bow will it be?’ I had it displayed on the dining room table that evening when he came home. He was so excited, just as I was. Fast forward a few weeks when the nausea set in, and boy did it ever set in. It was so bad I called my doctor who called me in some meds that didn’t seem to help at all. After a few weeks of no relief I switched doctors and got in for my first appointment. Jeremy was working so my oldest sister, Christa, joined me. To much surprise, as quickly as my sonogram started I saw babies moving all around. I froze. The tears started coming. I was instantly scared, excited, and beyond nervous. We had been blessed with not only one sweet baby, but two!

Kristin Ann Photo

Aside from nausea my pregnancy was normal – it was considered high risk due to having multiples but nothing out of the ordinary for months. It came time for our gender reveal, so I decided to do a jack in the box filled with confetti. My sweet cake maker filled it so it would be a surprise to us all. She knew the names for what the genders would be and also made us a cake so we could reveal the names of our sweet blessings. It was two girls! I was overjoyed, my husband was scared to death! He quickly got excited of welcoming our sweet baby girls in no time though! I had the dreams of every twin mom, matching outfits, watching them be best friends and doing everything together.

Kara Barner

Everything was going fine on our anatomy scans until they saw that baby B had more fluid in her sac. This brought some concern but everything else was measuring well so we just monitored her more closely. Their hearts were perfect, puffy lips, eyes, ten fingers and ten toes each, we had been blessed. Nothing showed any signs of any issues to come, but they came. I started to have contractions shortly after 20 weeks. We kept them off after many terbutaline shots, magnesium drips and bed rest. At 29 weeks though there was no stopping me delivering these sweet girls. I was measuring full term for a singleton pregnancy and my body just wasn’t going to handle anymore. We prayed. People all over the world were praying for these sweet girls, we knew God would not fail them and we knew that for sure. Our faith was in Him and that is where it would stay. On April 16, 2015 Bristol Grace and Brecklyn Ava were welcomed into this world by my amazing doctor, Dr.Molland at ORMC in Odessa.

The day we saw Bristol and Brecklyn come into this world was the greatest day of our lives. Well, the greatest day of our lives soon became our worst nightmare, as we were told our sweet baby Brecklyn had an extremely rare heart defect. Shortly after, were on a care-flight to Dallas Children’s Hospital. When we arrived, we were shocked to find that no one there had ever seen this specific defect before… but the head surgeon seemed confident she could fix it.

Kristin Ann Photo
Kristin Ann Photo
Kristin Ann Photo

Brecklyn’s heart surgery was a huge success and everyone in the NICU seemed to be excited and in good spirits. Our prayers and the prayers of many had been answered! We were in the hospital for what seemed like a year, but was really only a couple months. Some days she seemed to be getting better, and others she seemed like she was getting worse. We had been there for so long and it seemed like nothing was changing and the doctors said she needed time.

My husband had only been back at work a few days when he got a horrifying call in the middle of the night. Brecklyn was bleeding from her mouth and they didn’t know where it was coming from and couldn’t stop it. She’d been taken in for emergency surgery. The first update was hopeful. The bleeding seemed to have slowed, but they still hadn’t found the source. The next time the doctor came in he told us she was losing too much blood and he didn’t think she was going to make it. But she wasn’t gone…there was still hope. The next time the doctor came in, all hope was lost. She was gone.

On June 19, 2015, my world was turned upside down. God called my sweet Brecklyn Ava home, the second born of my twin daughters.

How was this possible? She had come out of heart surgery. She had survived being born at 29 weeks. She was my little fighter.

Kristin Ann Photo

We prayed for strength, for God’s will to be done. Throughout my entire pregnancy, their preterm labor, her heart surgery, and her recovery, I always had such a peaceful and calm feeling. I knew God was in control. It was a feeling I couldn’t ever really explain, but I always knew that everything would be okay.

I’ll never forget that day, every detail etched in my mind forever. Her heart surgeon sat on her knees and held me with my husband and family as we all cried. That same morning we found out she also had DiGeorge Syndrome. She had lived for 2 months and 3 days. She fought long and hard to have so many odds against her, but we truly never knew just how sick she really was. Once we found out all DiGeorge could hold, we realized how blessed we truly were. To us, this was God’s reason he needed her more than we did. She taught these doctors something new, and she taught us all that God is always in control. It brought us some peace to know that her little life meant so much and served such a huge meaning.

At that moment, I realized God had given us much more time with her on Earth than some parents ever get. We were broken, yet we were so blessed. God had given us two months to love our daughter, hold her, see her, touch her and talk to her. She knew us. She got to spend twin time with her twin sister, meet many family and friends, and most of all, she knew love.

Kara Barner

The days and weeks that followed, I felt numb to the pain. Numb to the loss of my sweet Brecklyn. I was continually told how strong I was, yet inside I knew just how weak and alone I truly was. We were surrounded by family and friends that delivered meals, sent gifts, flowers and all, yet it didn’t feel as if we were truly living. We were just going through the motions. I had her twin sister Bristol to take care of and she kept me busy along with all of the planning for Brecklyn’s service. I missed Brecklyn and my heart was broken but I didn’t allow myself to truly feel the pain, the hurt deep inside that you feel at your core, the pain where you can’t catch your breath and you fall to your knees.

Each day I did what I had to do to get by, to take care of Bristol and to love her and give her the attention she needed and deserved, but oh how my mind wondered how and what our sweet Brecklyn would be doing if she were here. I should be nursing two babies each night, not just one. I had their nursery to come home to, an empty car seat to carry home, a twin stroller that would never be used, and a heart that would forever be shattered. But I knew I was still blessed in this storm.

Kristin Ann Photo

I was introduced to Scribbles and Crumbs and The Will to Choose (websites by fellow grieving mothers) and found the strength to open up to the pain I held inside. The day I opened my heart to feel the pain was the day I started healing. I had the will to choose how this was going to affect my life. I started living each day for the sweet child I would carry in my arms and the one that I will always carry in my heart. I opened up to the stinging pain, the hurt, the loss, having only one child to hold and not two. I cried oh, how I cried. I hurt so deep inside that I didn’t know how I would wake the next day.

The next day came, and I awoke to a beautiful daughter on earth and one in heaven, just as I had done for the past few months. But the pain wasn’t as fierce, it was there, but much softer. It has turned into a constant melody.

Grief is definitely a roller coaster that has its ups, downs, turnarounds, and drastic drops, but it has turned into a slower more enjoyable ride, one filled with sweet memories, ones where I can look to the skies and smile. My faith has pulled me from under the rock.

Beauty will rise from the ashes. I am living proof of that.

Kristin Ann Photo

We do our best each day to talk of our Brecklyn, to let her story and life be known to all, especially her twin, Bristol Grace. Brecklyn’s story and her little life touched many in her short 2 months and 3 days, and she’s changed our lives and hearts for the better. She’s brought people to God. She’s opened the hearts of many. She’s touched more than I could have ever imagined, and most of all, she has helped save another child’s life, one who had the same extremely rare CHD just like hers. I believe God put her in the care of Dr. Kristine J. Guleserian and her team at Dallas Children’s to prepare them for this child that was to walk in their doors after Brecklyn. She will also give the gift of sight to another child some day, she will continue to live on blessing others. Each reason helps me know that God is still using her to not only bless us but others, as well.

In honor of her, on the 19th of each month, Blessings from Brecklyn has been started, thanks to my sweet friend Kendra. We pay it forward either by buying someone’s coffee, sending a sunshine basket, or a random act of kindness. I do my best every day to help grieving parents in any way I can. I look for my Brecklyn in rainbows, butterflies, lady bugs, and coins I randomly find; she’s always letting us know she’s here with us. We spread Brecklyn’s love for all to see, and she now has a family ranch named after her, the Breckland Ranch.

Kristin Ann Photo

As long as I’m living, she’ll live through me. Always my baby, she’ll be.

I’ll always be a twin mom to the one I carry in my arms and to the one that watches over us in heaven. I’ve never been so anxious to get to heaven, but I’ll continue to enjoy each day I have here on earth with my Bristol and their little sibling that we will be welcoming in September. I know Brecklyn helped God pick this sweet rainbow baby just for us, and I know that we are forever blessed.

To God, we give all the glory.

Kristin Ann Photo

This story was submitted to Love What Matters by Kara Barner of San Angelo, Texas. She is a wife to Jeremy and mother to her twin girls, Brecklyn in heaven, Bristol here, and her rainbow baby due in September. A portion of her story originally appeared on the website On Coming Alive.

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