Credit: Erin Harvey
In addition to its amazing PBS KIDS programming and award-winning scripted series (who doesn’t watch “Downton Abbey”?), PBS is also known as a producer of excellent documentary television. One of its latest documentary programs is the three-part series “TWICE BORN Stories From the Special Delivery Unit,” which follows four mothers (and their families) as they struggle with high-risk pregnancies that qualify for fetal surgery at the world’s leading fetal surgery center, The Children’s Hospital of Philadelphia (CHOP). The series chronicles the families and their team of renowned surgeons.
Emmy-winning documentary veterans Monica Lange and Bonnie Cutler-Shear together developed and created “TWICE BORN,” which took 14 months to film while fully embedded at the hospital.
I had the opportunity to interview one of the mothers featured in the documentary, Shelly Ross (above, pictured with her husband Bobby). Shelly and Bobby are both DC-area natives (she’s from Northern Virginia, he’s from Montgomery County, Maryland) who met at James Madison University and married in May, 2010. They had a little boy in 2012 and a year later — by then they had moved to the Boston area — found out they were expecting again — only this time the pregnancy had a complication. At Shelly’s 18-week ultrasound, her baby was diagnosed with spina bifida. Here’s what she had to say:
How did you get involved with the PBS special?
We were going down to Philly to see if we could qualify for the surgery and they said “There’s a PBS special following families.” I had just the previous day been researching the surgeries and different families, and the pros and cons of the surgeries (and had watched some videos of families discussing the prenatal surgery and had bawled watching all of them) . It was so meaningful to hear their stories, and I appreciated hearing from families and not just the medical professionals, so how could I say no. I figured somebody could watch our experience and learn from it.
And at the time, you didn’t know you were going to qualify for the fetal surgery?
No. It was a crazy time in our lives. We were at the very beginning stages of a long process. We had to go down to Philadelphia, but we weren’t even sure if we would qualify or even choose the surgery.
How did it feel to be filmed during such an emotional time in your pregnancy? You were basically sharing all of this intimate information with strangers.
The first day was weird. I had never been on camera that way. But the truth is that we got to know the producers, the sound guy, the cameraman. It just became normal. We would talk to them about our decisions and what we were thinking. It was different too, knowing the point of the special was to capture real families. The producer, who was great, told us to just live our life. “Just do what you want to do.” They didn’t want us to do anything differently because of the cameras. They made us feel comfortable, and they’ve become friends. I’ve kept in touch with some of them.
In the first episode you get difficult news — that you don’t qualify yet. How did you respond to the “maybe” decision from the surgeons?
That was so difficult. We thought we were going to go and get a “yes” or a “no.” We hoped they would make this desision clear cut, but instead we had to wait for a whole month, and it still wasn’t a guarantee. We just had to wait. During that time, we had no idea if we should continue to research or make plans assuming we would get the surgery. We couldn’t really get back to our normal lives. It was challenging.
And what had been your “normal lives” before the diagnosis in your second pregnancy?
My son was only a year old when we found out we were pregnant again. My husband had started full time school again. And here we were with a second child on the way with lots of needs. It was definitely a curveball. My husband had to drop some of his classes that semester and take off the entire next semester. Our finances were up in the air, because moving again was not part of the plan. We had to sublet our apartment so we could move to Philadelphia.
What would your advice be for pregnant mothers in a similar situation?
We very quickly realized we had to allow ourselves to grieve this new twist. No one wants to hear that their child is not OK. That was important for us to do at the beginning and throughout the process… The grieving together was important, so we could move forward.
We also had to learn to be able to turn off the emotions and pursue medical opinions and find that balance for us. I had a really hard time sleeping, because I would turn off my emotions all day and that at night, all the emotions would hit me, and I’d realize “this nightmare is real.” We had to learn how to deal with that and so will other parents dealing with this. We also had to realize that there are going to be people who help and people who don’t or can’t help.
I had plenty of friends who were pregnant at the same time. It was hard not to compare myself to their healthy pregnancies. As we started to meet people who have kids with other needs through this process, it helped us to realize we weren’t alone. We were not alone, even though we felt it. So my advice would be to find a support group locally — at your church or hospital. It’s important to find those networks so you don’t feel alone.
The documentary also follows the doctors too. What was the doctor-patient relationship like?
I think the harder part of those boundaries is on the doctor. We had no reason to hold back, because this was our whole life. The doctors have the more challenging role of entering our suffering. We weren’t going home, because the hospital was our home. I really appreciated the doctors and nurses and cleaning ladies in our unit. I really respected the staff. They had compassion and shared in our struggles with us. Then they also had to be able to turn it off and go back to their families a the end of the day.
They treated us as people not just patients. I have been in other facilities where I didn’t feel that. They’ve had to learn how to balance all of that, and I know it’s painful for them to see their patients in pain. They were all really giving of themselves.
Did you get to know any of the other families featured in the special?
None of us met each other during the filming, probably because of a timing thing. I don’t think if we were both being treated there was any way to really see one another. I was able to meet one of the moms afterward, however. We had this connection – because we knew enough about each other. I’ve only met the one other mom in the special, but I did meet other parents who had fetal surgeries who were just not in the special.
It’s a spoiler, I guess, but you did have a happy outcome. Tell us about your baby.
Her name is Luelle. Having a baby regardless is incredible — knowing this is your child that you’ve prayed for and wanted. But I do think it was more meaningful with Luelle. When we got the diagnosis, there was no guarantee that we would meet her and that she would do well. That we made it so far in the pregnancy was a miracle. I think because of getting her diagnosis, this person that we’re treating wasn’t someone I actually knew. I loved her, but I didn’t know her. But once she was born, it was so special to get to know this person I had been caring for all this time. I love seeing her personality and likes and dislikes; her limitations and strengths.
How is she doing compared to what you were expecting?
Her initial prognosis said she’d be paralyzed and have bowel and bladder problems and and club feet – a host of things that would be likely. So for her to be doing so fantastic is amazing. She has not needed any interventions, The Hydrocephalus resolved on its own, and has had no issues with her bowel or bladder; she has feeling all the way down to her toes and is even pulling herself to a stand. She is weak in her ankle, and it will be a process to teach her to walk — she doesn’t have quite the strength yet and needs therapies and orthotics. It’s frustrating to watch her struggle, but I daily think back to her initial prognosis and am so thankful that she is so drastically improved from what we expected.
I’ve read that you and your husband both credit your faith with getting you through this time. Can you tell us about that?
Before our kids, my husband and I had had successful jobs. I was a pediatric nurse, and he was in sales. But then we both went through serious health issues – six surgeries and other freak things we experienced as newlyweds – that really challenged us. We really felt that as we experienced suffering, we also experienced our faith and our belief in God. We believe in God and that He does things in our life and will reveal himself to us.
My husband is in Seminary now, that’s why we’re in the Boston area. Because of everything that had happened to us, the news about the pregnancy was very upsetting, but it wasn’t that surprising. The Lord is calling us to help suffering people, and here’s one more way we can relate to them.
Faith has made a huge difference, because we feel like life is hard – everyone experiences suffering of some kind. We find that having hope outside ourselves is what has helped us, and we continue to look at other people and not just ourselves. There’s bigger things at work, and we’re not alone in this. God is giving us hope, so we don’t have to be scrambling.
Having hope doesn’t take away the pain, but it has given us a way to guide our decisions.
What do you hope people will get out of the series?
We hope that we can definitely bring education to fetal surgery and spina bifida. Even some doctors don’t know it is an option. Our doctor knew, but what if he had not been familiar enough to know it was an option.
Mostly I remember the first month when we had a diagnosis, we felt totally isolated in our little dark world. I so hope this series can encourage others to realize that they aren’t alone.
Watch a clip of Shelly and her husband Bobby dealing with difficult news:
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Sandie is a PBS VIP (Very Important Parent) ambassador, but no compensation was received for this post. When she’s not watching PBS, she writes about
