Yara Osler was 11 weeks pregnant with twins when a nightmare shook her from her sleep. She dreamt that one of the babies was gone and something was wrong with her other unborn child.
The following week, she had an ultrasound. She thought she might still be dreaming when her doctor shared the news that her nightmare had come true. She had indeed lost one of the twins — a girl — and her surviving baby boy had omphalocele, a birth defect of the abdominal wall where the infant’s intestines, liver or other organs protrude outside of the abdomen through the belly button.
Confused, numb, overwhelmed; those were at the top of the list of Yara’s feelings that day. Celebratory didn’t make the list.
But shortly after the diagnosis, when she walked into her first meeting with Cassandra Kelleher, MD, a pediatric and thoracic surgeon at Massachusetts General Hospital, she heard a word she wasn’t expecting: “Congratulations.”
“Dr. Kelleher said to me, ‘You wanted to have a baby and you have a baby. He’s not an abnormality; he’s a baby,’” Yara says. “‘If you get overwhelmed by any of it, remember that you are a mom with a baby and that you’re in good hands.’”
With Dr. Kelleher and Karen Parsons, RN — coordinator of Mass General’s Fetal Care Program — Yara realized she was truly in good hands. She had people in her corner, ready to guide her through her son’s medical challenges.
A Guide for the Next Step
Yara’s path to pregnancy wasn’t easy. She and her husband Tom had struggled to conceive, enduring several miscarriages. They welcomed their first son, Orion, through in vitro fertilization and went the same route when they decided to conceive another child.
After her local maternal-fetal medicine doctor in Wayland, Mass., discovered the baby’s omphalocele on the ultrasound, he cleared his schedule to answer all her questions, then referred Yara to Ms. Parsons at the Fetal Care Program. Ms. Parsons called Yara within two days to help her coordinate the numerous appointments ahead. “I felt like I was blind and she was holding my hand, asking me to trust her,” Yara says. “She gained my trust to take one next step forward.”
That next step was meeting with Dr. Kelleher, who outlined the plan for the baby’s surgeries after birth. Ms. Parsons walked Yara to the appointment and stayed with her and Tom, taking notes and answering Yara’s questions afterward. Dr. Kelleher and Ms. Parsons have a close relationship, thanks to Dr. Kelleher’s position as director of the Fetal Care Program. That bond and their commitment to her family solidified Yara’s decision to deliver her baby at Mass General.
Dr. Kelleher told Yara that the baby’s first two years would be bumpy, but he was going to be alright. “She told me, ‘By the time he’s three or four, he’s going to be like any other 4-year-old,’” Yara says.
Bumps in the Road
To get to that point, Yara and her son faced a complicated delivery and several post-delivery surgeries. What made that outlook easier was Ms. Parsons’ experience and dedication.
“Having Karen there to think for me and be emotionally available made it so I could focus on what’s important,” Yara says. “She knew I was going to go through so much, and she was my partner in simplifying this. She anticipated things I didn’t even know I needed: scheduling a visit to see the NICU, setting up lactation consultants, telling me how many doctors would be in the room when I delivered. It felt like a concierge experience.”
Yara delivered baby Oliver via cesarean section at 35 weeks, with a dozen doctors on hand to tend to the baby. Within 24 hours, Oliver had the first of several surgeries to place his organs back in the abdominal cavity. Knowing that Yara came from a musical family, Dr. Kelleher requested a music therapist to sing during the procedure.
All told, Oliver stayed in the hospital for almost two months, until he was able to eat, breathe and excrete on his own. Yara’s mother — a professor and artist — came from Brazil to support her daughter and sing to Oliver in the NICU at night, and Yara’s father and brother played The Beatles, bluegrass and lullabies on their guitars so Yara was inspired to sing to him as well.
Like any other 4-Year-Old
Oliver was in and out of the hospital for his first two years, Yara says, but his final surgery at age 2 was a success. He is now 4 years old and loves swimming, riding his balance bike and playing with his siblings: Orion, 6, and Odessa, 1. Dr. Kelleher regularly checks in on his health, but as Yara puts it, “He’s doing fantastic.”
Yara remains close with Ms. Parsons and the Mass General nurses and sends photos to show them how much he’s grown. Her gratitude for how they cared for her and Oliver during that time is still at the surface.
“It was a great support system,” Yara says. “They were so there for me and my son. They really celebrated him.”
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- To contact the Fetal Care Program directly, please call 857.238.2273