Lori’s Story: In His Sovereign Hands
November 5, 2025
Our Mama Bear, Lori, is sharing her story and her son’s story for our blog today. Philip was diagnosed with with Trisomy 13 prenatally and surprised everyone by not only making an appearance, but spending a little time at home! While doctors were pessimistic, Lori knew that Philip was in God’s sovereign hands. Philip had a different story to tell.
Lori and Philip’s story is an encouragement any family with a diagnosis of Trisomy 13. Each baby has a different story to tell!
Lori and Philip’s Story: In His Sovereign Hands
We had an early ultrasound done at about 12 weeks gestation. My midwife saw something concerning; she called it a “key-hole sign” on my baby’s bladder. She thought it was a lower urinary tract obstruction, so sent me to the MFM [Maternal Fetal Medicine Specialist] to get a closer look. The scan at the MFM showed a large umbilical cyst and an abnormal facial profile. She highly recommended we take an NIPT [Non-Invasive Prenatal Testing], which I had never done before, and this was baby #11. But something in her urgency caused me to go ahead and take the test. The results came back 62.2% positive for Trisomy 13. We also found out from the blood test that we had a little boy. We named him Philip.
It was difficult for me to accept the results of the NIPT at first. I remember telling the MFM over the phone that abortion was NOT an option, not even to offer and that we’d see what his next ultrasound looked like. I thought perhaps the test was wrong, that he was just fine, and decided to stay calm until we knew more. However, I researched like crazy between then and our next appointment. We saw a different MFM doctor at Philip’s 16-week ultrasound, and according to that doctor, you’d have thought Philip was going to die at any minute. He gave us absolutely no hope at all and recommended that if I insisted on continuing the pregnancy that I not bother with any more prenatal appointments, but rather just enjoy my pregnancy while I had him. If by chance the baby did make it and was born alive, I should just hold him and keep him comfortable until he died. My husband and I were absolutely devastated as we walked out of that building… We loved our little Philip, we wanted him to live, and we knew that God had his little life in His sovereign hands.
Well, we had many more prenatal visits for Philip because we left that practice and found a Pro-Life OB/MFM after we were given great HOPE for Philip’s life via Trisomy support groups & prenatal diagnosis ministries. We loved getting to see him on the screen at his MFM scans, and each time we saw him, he was alive! I gave birth to him on Sanctity of Human Life Sunday. He came naturally on his own at 39 wks and weighed 6 lbs, 3oz!
We chose to provide life-saving interventions for him. He needed to be intubated immediately after birth. I heard only 3 tiny cries from him, but that was enough to tell me he was alive!
We will never regret trusting God with Philip’s life and seeking to provide him the very same chance at life any other medically needy newborn would receive. God gave us 65 days with Philip, 5 weeks in NICU and 4 weeks at home. We had him during a Covid restricted time, so my husband and I were the only ones able to be with Philip in NICU, and we wanted so desperately to get him home to meet all of his brothers and sisters. He was doing great too! Taking his breast milk feeds and medications via his g-tube and growing like a little weed! He absolutely LOVED being held and, oh boy, did he know it when he was put down! He wanted cuddles, cuddles, cuddles, and everyone was only too eager to oblige!
I praise God for giving Philip to us and leading us to find hope for him through the stories of other Trisomy families! I’m so thankful we pursued interventions for him. We would have missed EVERYTHING with our precious Philip if we would have listened to the counsel of the MFM doctor who diagnosed him. Now we have pictures, videos, and cherished memories that we can share as a family as we look back on one of the sweetest times of our life. I’m so grateful and blessed that God chose to bring Philip into this world through us and allowed us to love and care for him. Trisomy 13 babies CAN LIVE! And every single second of their life is a testament to God’s compassionate mercy. We learned so much from Philip. He has changed our lives for the better forever!
I wanted to keep him. I wanted to see him growing up. I wanted to see how much he could learn and how far he could go. We had so many appointments lined up to help him grow and develop and go as far as he could. Whatever it took, we were going to help him meet his fullest potential in this life.
So many people want to say Trisomy 13 children have no “quality of life.” NONSENSE! They have a beautiful quality of life that we can’t even comprehend! It’s been such a glorious journey and I will cherish our time with Philip until I see him again!
Philip was born when [Mama Bear Care] was still Verity’s Village, but Beverly’s care package and books were immensely helpful and encouraging. The Diagnosis to Delivery Facebook group was my special safe place to share with other mamas who “knew” what I was going through.
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