The Alsop’s story of finding hope after loss to cystic hygroma and hydrops

The Alsops story of hope facing loss | cystic hygroma | helloHOPE

It is an honor to share the Alsop’s story of hope with you. Katelyn and Michael faced difficult diagnoses during pregnancy (cystic hygroma, a heart defect, severe hydrops, and Down syndrome) and the loss of their baby, James, at 31 weeks. They shared with us about how they processed the diagnoses, worked together, and held onto hope.

The Alsop’s story remembering James

Katelyn and Michael were enjoying life as a family of three with their eight-month old daughter, Evy, when they were surprised by the news that Katelyn was pregnant. After the initial shock subsided, they rejoiced and were filled with such gratitude for this new life that they had been given.

All was on track for a typical pregnancy until the morning they went in for their 20-week ultrasound, an anatomy scan that would, among other things, reveal the gender of their baby. This appointment became serious fairly quickly when the ultrasound tech called the doctor in and she delivered news that would haunt them in the weeks ahead: “I’m concerned; your baby is very sick.”

Their doctor explained that their precious baby had cystic hygroma, a heart defect, and severe hydrops. An amniocentesis revealed a few days later that their tiny son had Down syndrome, as well.

Processing difficult diagnoses during pregnancy

Katelyn remembers the initial shock and deep grief over the news as they headed home to be greeted by their parents and other family members. Tears flowed as they broke the news to their family and began to process all they had learned. As their hopes and dreams crumbled, they knew that their son was a gift and, no matter the length of his days on earth, his life had a purpose.

Katelyn carried their son James until 31 weeks, and the hope she and Michael carried through such a painful loss is powerful. In addition to sharing about the details of their story on her blog, (links below), we had the privilege of asking Katelyn a few questions about processing a difficult diagnosis during pregnancy and what hope looks like in the face of deep loss. We hope the conversation is a source of courage, inspiration, comfort, and hope for our community.

helloHOPE: What do you wish you had known at the beginning of your journey with James's diagnoses?

Katelyn James Alsop: I wish I had known how long our journey was going to be. We originally thought it was going to be two to four weeks, but it lasted for three months. It was the hardest three months of my life because everyday I was expecting it to be the end, but it wasn't. That can start to play tricks on you and on your mind. It was hard to keep going, but looking back, each month that I was pregnant with him after his diagnosis prepared me for the end, and I'm thankful for that.

hH: What would you tell another couple receiving a difficult diagnosis for their baby during pregnancy?

KJA: I would encourage them to celebrate the rest of their child's life, however long it may be. It's so hard to let yourself love a baby you're going to lose… But I can't explain how thankful I am that I can look back on my time with James and know that I loved him with all that I had. I'm glad I didn't suppress the pain but chose to feel it and love him even when it was so hard.

hH: How did you and Michael grow closer through this painful reality and your loss? What did that look like practically?

KJA: Michael and I got in bed every night, and he would hold out his hand across the pillow and ask how I was. Normally that led to me sobbing and then praying together. We were at our lowest place... And there is something about being in that place together that can draw you closer. I have never felt closer to him than when we were in the hospital together after I gave birth to James. It was the hardest day of our life, but we did it together. I feel like you have to choose be transformed by trauma instead of torn apart.

hH: You shared your story with such hope and faith. How would you define hope, and what does hope look like in the midst of suffering and loss?

KJA: Hope is me remembering the promise that God has a plan for me. He didn't become a bad God the moment something bad happened to me. He's the same yesterday and today and forever. So when I think about our story, I can rejoice in the fact that I know that God had a purpose for my baby's short life. I know that I didn't just suffer for the sake of suffering. I also know that God is using our son's life to change the lives of others, and that gives me hope. I wish this wasn't my story, but it is. So I have a choice... I can either be mad at God or I can fight through the pain to understand his purpose.

hH: For someone who does not know the Lord, what would you say to them about how your faith carried you?

KJA: I have a relationship with the Lord. God isn't just an idea that makes me feel good... I have truly given my life to Him. That means that I'm striving to use my story and my gifts and my family for His glory. I know that He hasn't forgotten about me, even in this tragic situation. In fact, I felt closer to Him than ever before because of all of the pain He walked me through.

Katelyn and Michael, thank you for sharing James’s story with our community today. If you would like to read more, Katelyn wrote their story on her blog at Katelyn James Photography so beautifully, and it is our honor and joy to point you there today. Read part 1 here to learn how she and Michael processed those first weeks after receiving James’s diagnoses and part 2 here to read his beautiful birth story. She has written two more touching posts that can be found here and here, as well.

Our desire is that families receiving a difficult diagnosis during pregnancy, whether terminal or not, would find hope in the way Katelyn and Michael approached their journey with courage, grace, and faith. Their ability to face their circumstances, support each other, and see God’s goodness in the midst of deep pain and loss truly inspires us.

Here are a few additional resources: