‘They couldn’t seem to find a cause for her fatal sickness. No one could explain how this happened to our family – again.’

More Stories like:

“When we found out we were pregnant for the second time, we were overwhelmed with emotions. At first we were shocked and somewhat terrified, but we were also joyful and excited all at the same time. It all happened rather quickly after the loss of our firstborn, so it’s only natural we were consumed with so many thoughts. We tried our best to let go of the anxiety, surrender to the universe and embrace this blessing with open arms. This child was an answer to our prayers. We could only hope to call Madison Grace, our rainbow baby.

See, 6 months prior to finding out about Madison, her sister Ava was born. It was the birth of this little girl that turned our world upside down. Our miracle, Ava, was born on November 13, 2016. After a long night in the hospital due to complications, I had to have an emergency C-section at 35 weeks pregnant. When Ava was born, my husband and I quickly found out we had a sick newborn. We were referred to CHOP, where we spent 6 weeks in the NICU. There was a tremendous amount of testing that was done, and our precious girl fought hard, through it all. She had triumphs and setbacks, good days and bad, however after everything, they just couldn’t seem to find a cause for her fatal sickness. After 40 precious days of life, our sweet Ava became our angel baby.

Sick newborn in NICU who holds on to mother' finger
Courtesy of Ashlee Korman

On December 22, 2016, Ava passed away peacefully in my arms, with her daddy right there by her side. Her time with us was short but we are so very grateful for every second we had with her. After a few months and some additional testing, we eventually found out Ava had a rare chromosomal mutation, known as KAT6A, potentially one of the first documented severe cases. However, what we also found out, was that this was a spontaneous condition. So, the doctors gave my husband and I the okay to have more children.

Mother holding newborn after giving birth beside her holding her newborn in NICU
Courtesy of Ashlee Korman

Fast forward to May 2017, our journey continued when we found out about Madison. Those emotions certainly came flooding in, but overall we were both extremely hopeful. The pregnancy was progressing smoothly, with our minds at ease that all was going well. However, just 4 months in, our world came crashing down all over again.

Pregnant woman holding her stomach and smiling after losing first born
Courtesy of Ashlee Korman
Father kisses newborn's toes in NICU who has chromosomal abnormalities
Courtesy of Ashlee Korman

We had Madison’s second trimester ultrasound and the doctors found some similar abnormalities to her sister, Ava. So, we were referred back to CHOP and underwent more testing. It was determined that Madison, most likely, also had some type of chromosomal abnormality. No one could explain how this happened to our family again. My husband and I were completely numb, and at 21 weeks pregnant, we lost our second daughter as well. After a heartbreaking delivery, Madison joined her sister in heaven on September 7, 2017. We later found out she also had a rare condition, one known as Charge Syndrome. This was a completely separate case from her sister, and again, it all happened spontaneously. Still waiting on answers, several months went by with us waiting for test results. We were finally told the future looks bright, and the doctors have faith we can continue trying for more children, such bittersweet news for our grieving souls.

Mother sits in chair holding newborn with chromosomal abnormalities while looking over at husband beside her
Courtesy of Ashlee Korman
Mother holds pink knit hat that has necklaces laying on it that represents her two daughters that have passed
Danielle Danver Photography

Now here we are, 2 years later, navigating through life with a completely new normal. It’s been a rough road many people will never understand, because when you lose a child, the grief journey is messy. Your world is forever changed and the journey makes you feel as though so much has been lost. I have even found myself lost in the darkness from time to time, trying to figure out who I am now. However, through everything we’ve endured, I’ve also discovered my faith is stronger than my fear. I’ve realized this confusing despair is not only darkness and defeat, but it’s love and faith intertwined.

Our girls brought so much love into our lives, and I know this grief is just all the love we have for our daughters, with nowhere to go. The love is abundant, outpouring through our souls. So I’ve learned to lean into my grief, and embrace it, because love heals and when we’re broken open, that’s when the light can shine in. In the midst of pain and anguish, that’s when joy can seep through the cracks. I try not to dwell in the darkness and remember that behind the wildest storm, is a ray of light just waiting to peak through. My perspective is forever changed and I see life through a completely different lens. So even though Ava and Madison are no longer with us physically, I will continue to trust God, lean into my faith and follow the light, knowing it’s not what happens to us in life, it’s how we respond to the circumstances.

See, even though it’s been rough and messy, we are grateful for all of it because we stand firm in our faith. We have two beautiful blessings, who we will hold in our hearts for eternity, and what we know for sure is that by the grace of God, we will have another beautiful blessing, who we will one day hold not only in our hearts, but also in our arms.”

Mother sits in chair holding baby in NICU who didn't make it
Courtesy of Ashlee Korman
Newborn who has since passed wears pink knit hat in NICU holding on to her mother's finger
Courtesy of Ashlee Korman

This story was submitted to Love What Matters by Ashlee Korman of Pennsylvania. Have you been through a similar experience? We’d like to hear your journey. Submit your story here, and subscribe to our best stories in our free newsletter here.

Do you know someone who could benefit from this story? Please SHARE on Facebook to let them know a community of support is available.

 Share  Tweet