Eli Bradley is our oldest son, he just happens to live in Heaven.
After several years of infertility, we were finally pregnant and we told the world! We had a fairly uneventful pregnancy for the first 20 weeks and looked forward to the ultrasound so that we could satiate our curiosity about the sex of our baby. We hoped that knowing that would take away the nagging feeling, or doubt that we’d really be bringing a baby home.
That day in April was one we will never forget. An adverse ultrasound at our doctors’ office sent us to Minnesota Perinatal Physicians at Abbott Northwestern Hospital. There, we had a Level 2 ultrasound. They told us that our little boy (my husband discovered that he was a boy on our first ultrasound!) had choriod plexus cysts in his brain, a cleft lip and probably a cleft palate, a diaphragmatic hernia which allowed his stomach to migrate into his chest cavity pushing his heart to the right side of his chest, a severe heart defect, an omphalocele (his liver and gallbladder were encased in a membrane bound sac outside of his abdomen), and clenched fists. These things, seen together, are markers for Trisomy 18. The doctor told us that even if our son’s chromosomes were normal, this constellation of anomalies would be hard to survive. After telling us the statistics of survival in babies with Trisomy 18, he took a deep breath and began to tell us that we had a “legal option.” We stopped him and told him that we would carry our baby. He then told us about a plan of care called Perinatal Hospice.
Perinatal Hospice is not a place, it’s a method of care. Pioneered by Dr. Byron Calhoun at Madigan Army Medical Center, it seeks to support the decision of the family to carry the pregnancy to its natural conclusion, providing obstetric care for the mom and supporting but not intervening in the life of the baby. We knew that this was the right fit for us.
We left the office in tears, but somehow realizing that we had known all along. We loved our son and made a decision to cherish and enjoy all the remaining moments we had with him. The doctors suspected that it would be weeks, rather than months, and that he would likely die of heart failure in utero. So, after telling our family, we set about enjoying and celebrating Eli’s life. Yes, we did cry, but as the days turned into weeks the tears turned into laughter as we felt him tumble in my belly. Subsequent ultrasounds showed us a baby who was doing well inside his mommy! He was growing and apparently gaining weight. We met with a care coordinator at the hospital and made a detailed birth plan that provided comfort care for Eli. On September 6, 2002, on his due date, Eli Bradley made his way into the world. He weighed 5 lbs., 6 oz.! He lived in our arms for 29 minutes, as we hugged him, kissed him, sang to him and then told him it was ok to go be with Jesus. After his heart stopped, his dad gave him a bath and we dressed him so our family could meet him. Everyone took turns holding him and we took hundreds of wonderful pictures.
As we carried Eli, many people asked why we would choose this path. One man asked me why I would bother bonding with a baby who would die anyway. The way we saw it, it was not up to us to choose the number of his days. We were entrusted with his life and we felt so privileged to have this very special boy. Was it painful? Yes, absolutely. Would we do it again? Yes, absolutely. There is nothing we were more proud of than our son and the bittersweet moments were more sweet than sad. He showed us so much about joy, and about love. Thank you, Eli, for visiting us for awhile.
Back to Trisomy 18 Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.