CuddleCot in honor of Jonah

Hi Family and Friends,

As many of you know, our journey has been long and challenging. Each step has been a testament to our faith and hope, trusting in God’s plan through every trial. In the midst of our heartache, we’ve sought to find purpose and bring awareness to Potter’s Syndrome, infertility, miscarriages, and infant loss. We want to make a difference for anyone enduring these painful experiences, whether they are known to us or not.

After enduring three miscarriages, we were blessed with our miracle, Sienna. We dreamed of giving her a sibling, but last May, we faced a fourth miscarriage. When we finally became pregnant again and made it past 13 weeks, our joy was boundless. Despite the challenges of the first trimester—bleeding and a subchorionic hematoma—we were elated to share the news with our parents, immediate family, and a few close friends.

However, at 16 weeks, I noticed my belly seemed to be shrinking. I tried to stay calm because we had a heartbeat check that day with a Doppler, and everything seemed normal. We were so hopeful!

When we went for our 19-week anatomy scan, our excitement quickly turned to dread. The ultrasound technician became quiet, asking about fibroids and genetic issues before calling in the doctor. I still remember the crushing words, “There’s no easy way to say this; I have bad news.”

Our hearts shattered. On the screen, Jonah looked perfect. His heart was beating. Yet, the reality was harsh: there was no amniotic fluid left. Jonah had a vascular ring around his heart and a cystic hygroma behind his neck. He was measuring three weeks smaller than he should have been. The absence of amniotic fluid was due to missing kidneys, which meant no fluid or urine production and no chance for his lungs to develop properly. Our options were to terminate or carry to term, knowing the heartbreaking odds.

We were devastated. It felt surreal. I had just begun feeling him kick, and everything seemed so perfect. We sought alternatives, and a dear friend whose husband is a doctor told us about a clinical trial for inserting amniotic fluid to aid lung development. We pursued this with hope, contacting research centers, and managed to get an initial appointment at Columbia University. However, just days before our visit, the trial had been restricted to babies with one kidney. We were left feeling disheartened and lost.

Our only solace was our faith in God. I immersed myself in miracle testimonies to keep my spirits up. Sienna’s survival, despite initial fears, was a beacon of hope. Her heart rate had dropped to 60 bpm at 8 weeks, and we were told we were miscarrying. But after fervent prayers, her heartbeat rebounded to 120 bpm. The doctors called it a miracle.

Despite the bleak prognosis from my doctors, we could not bring ourselves to terminate the pregnancy. Jonah moved and kicked with vigor whenever I prayed with my hand on my belly. We continued to pray for a miracle, but as time went on, our prayers evolved. I began asking for God’s will, trusting that He knew what was best for us. We leaned into our faith, finding strength in God and the comforting presence of the Blessed Mother Mary. We prayed daily, taking one day at a time, despite the doctors’ warnings that Jonah might not make it past 32 weeks. Yet, Jonah kept fighting, growing stronger each week.

Finally, around 34 weeks, the doctors scheduled a C-section for 37 weeks and 4 days, which would make him full term. Our journey involved switching doctors, hospitals, and attending numerous appointments, leaving us both mentally and physically exhausted.

In the midst of our struggle, I learned about a CuddleCot from a Facebook page dedicated to Potter’s Syndrome. A CuddleCot is a special cooling unit that allows families to spend precious time with their baby after loss, preserving the baby's body and helping families create lasting memories.

We knew we wanted this for Jonah if he did not survive. Our hospital confirmed they had a donated CuddleCot that we could use. Jonah was born at 8:23 am via C-section. He was blue and didn’t cry, a devastating sign that his lungs might not be fully developed. Yet, as soon as he was placed on my chest, he began to gain color. Our priest performed an emergency baptism, and we felt an unexpected peace. We were grateful for those few moments to hold, love, and baptize him before he took his final breath peacefully in my arms.

Thanks to the generous donation of the CuddleCot, we were able to cherish four more days with Jonah. We held him, dressed him, and kissed him, taking time to grieve and honor his tiny, beautiful features. Sienna even held him and gave him a kiss. We can’t express how invaluable those extra moments were for us.

Today, we wish to give back in honor of Jonah. Not all hospitals have access to a CuddleCot, as they are often funded by donations. Each unit costs around $3,500, plus maintenance costs. We are raising funds to purchase a CuddleCot for a local hospital in Jonah’s memory.

Any additional funds will be donated to Hope After Loss, a nonprofit organization that supports parents experiencing miscarriage or infant loss, helping with funeral costs and other needs. If you prefer to donate directly to Hope After Loss, please do so in Jonah’s honor.

We are deeply grateful for your support and prayers throughout our journey. We hope that, through your contributions, we can help another family find comfort and support during their time of need.

With love and gratitude,

Malissa, Ryan & Sienna

And our angels: Jonah, Elijah, Mira, Gyda and Bjorn