When I was pregnant again after loss, I wanted everyone at my OB’s office to know that I had lost a baby. I wanted the receptionist to know, the lab technician, the sonographer, the nurses, doctors – anyone with whom I would interact needed to know that I was anxious and scared because of my loss, but also happy and joyful at the hope of a rainbow baby. For me, that meant I had to tell people. I had to remind them that this was not my first pregnancy, and it was not a blissful, naïve one. Most of the employees at the clinic knew my story because they were there during Lily’s stillbirth. Yet, there was always someone new, someone who didn’t know, or didn’t clearly read my chart.
It is common in pregnancy after loss to feel like you want people to know, but you don’t necessarily want to talk about it with everyone you encounter during an appointment. But what if there was a clinic that specialized in pregnancies after loss? A clinic where everyone knew exactly why you’re there and you don’t have to explain why you want extra support, why you may have to schedule what I call “sanity” checks to hear the baby’s heart rate, or why a certain gestational time may require extra TLC from your medical team.
I live outside Madison, Wisconsin, and we are extremely lucky to have a strong support group, Bereaved Parents of Madison, and a pregnancy after loss group, Rainbow Pregnancies of Madison. As of June 2017, we are also lucky to be home to the first rainbow pregnancy clinic in the United States. There are four known rainbow clinics in the world. These clinics address the emotional and medical needs of women expecting again after loss.
I recently sat down with Dr. Kristen Sharp, the progressive obstetrician in Madison and fellow loss mom, who founded the Hope After Loss Clinic, and discussed her unique idea and how it is helping families around the Madison area cope with the complex journey of a pregnancy after loss.
Dr. Sharp went to medical school at Loyola University in Chicago, and did her residency at the University of Michigan in Ann Arbor. She lost her son, Caleb, in 2013. Her personal experience in losing her second child changed the way she worked as a doctor and her rainbow pregnancy opened her eyes to the challenges women experiencing pregnancy after loss face.
She opened the Hope After Loss Clinic in Madison in June of 2017. The clinic is open once a week on Wednesday afternoons. The clinic provides routine OB care for pregnancies after loss but also combines that clinical care with psychotherapy. Every other week a clinical psychotherapist is available for patients to see as well. The first appointment is one hour and subsequent appointments are the routine 15-20 minute check ins. Each appointment also has the opportunity for an expecting mom to meet with the therapist for one hour. Dr. Sharp also notes that there are times when an expecting mom will need more time. “If the loss happened at 28 weeks, we anticipate that and give her more time.”
Dr. Sharp tells patients,
“You are the driver of this bus. You let me know how often you need to be seen. The minimum I need to see you is the routine OB schedule – once every four weeks. But I have people coming in for heart tone checks every week. I give them the flexibility to identify what their needs are and tailor their OB care to that.”
The clinic is already full with Dr. Sharp seeing 15 women for pregnancy after loss, and she already sees need to expand the clinic to at least another half day or, if possible, a full day. Presently, Dr. Sharp is in clinic once a week, however, she’s also in charge of resident education at a UW Health clinic, so in addition to a partner, she also has residents available all week for patients’ needs. She reports that the volume of patients is such that Dr. Zweifel, the clinical pyschotherapist, is also considering expanding her hours to meet patients’ needs. The clinic also welcomes patients going through a loss.
Her children were the inspiration for the clinic. While pregnant with her first son, Baker, in 2011 she braced for a NICU stay and surgery after his birth when his anatomy scan showed a cyst on his abdomen and a bowel rupture. This is all associated with cystic fibrosis. He was also growth restricted. She remembered talking to her OB and having him say “I think something is fundamentally wrong with your child, and I want you to be prepared for that.” When he was born, everyone was surprised to learn he was fine.
In 2013, she moved to Madison and became pregnant with Caleb. Her first pregnancy colored her experience with the second. She said “coming into that pregnancy I was a ball of anxiety; was totally freaking out about my prior experiences.” The first trimester screen was abnormal; he had a thickened nuchal fold, and they had to do additional testing. They found out he was a boy, but additional testing showed he was fine. She thought that was her bump in the road for that pregnancy. She did, however, convince her OB to do the anatomy scan early at 18 weeks. That’s when “the floor dropped out.” They found out he had a large cyst in the back of his brain, an underdeveloped cerebellum, ambiguous genitalia, and a possible cardiac defect.
The same day they had an amniocentesis and other genetic testing. The tests came back showing a genetic abnormality that would mean significant mental retardation, deafness, blindness, and the likelihood he would be stillborn. She and her husband made the difficult choice to end the pregnancy. She was induced at 20 weeks because she wanted to hold him and they were able to spend 3 hours with him.
She noted the unique aspect of her loss and how it changed her approach to care: “It really opened my eyes … I remember going to the perinatal center for ultrasounds and here we’re going in to stop the pregnancy and I’m sitting in the waiting room with people who are giggling about finding out what they’re having while my life is crumbling around me. It’s just little things like that I thought, women going through this should not be sitting in the waiting room like this.”
Her rainbow Amelia was also an inspiration for the clinic. She had “no clinical issues with her. It was a smooth pregnancy, but [she] was a hot mess emotionally, which [she] didn’t anticipate.” She felt she did not bond with her and she did not want to talk about the pregnancy.
In discussing pregnancy after loss, she said, “That’s more misunderstood than the loss pregnancy. People expect you to be grieving and sad at the loss, but people just don’t – and I’m saying this generally, some people get it – but people just don’t understand that rainbow pregnancy.”
I asked Dr. Sharp questions about her clinic and the following is a transcript of the Q&A.
Tell me about the idea for the clinic. How did you decide this is what you wanted to do?
I had my loss in 2013. Up until that point, I was just a practicing OB/GYN. We had dealt with a lot of loss at the University of Michigan just because we were a large referral center so we would see a lot of complicated pregnancies and it was something we dealt with quite frequently so I thought going into my loss ‘I have this whole experience/background. I got this. I know how to do this.’ And it really – going through that experience is just so different.
I remember when I would take care of women who experienced loss at Michigan, I would think ‘oh today is the worst day of their life and every day is going to be a little bit better.’ So when I had my own loss I went in with that same mindset. And then every day wasn’t a little bit better. Actually, the worst days came a few weeks or a couple months afterwards. So I just kept thinking ‘what is wrong with me? Am I depressed? What is going on?’ So really, having that personal experience really opened my eyes.
As a clinician, I think I’m pretty sympathetic and empathetic, but I had no idea what this experience was for people and I also then saw what little training we get in the bereavement aspect of loss. We get none. I can’t say that universally, but I haven’t found a single obstetric program nationwide that has good training in bereavement. So it took about two years after my loss for me to really mobilize to feel like I could do something about it.
When I first started to think I should really take this life experience and make a difference, it was mainly on the education piece of it. I’ll create resident education; I’ll educate my fellow partners on how to take care of people. I thought I was missing the boat there. The education piece is huge, but there are so many opportunities for direct patient care. So really it was just through those thoughts that I was like ya know, I’m gonna open up a loss clinic.
I looped in Dr. Julianne Zweifel early in the process. Part of this clinic is clinical care, but more importantly than the clinical care is really the emotional care. The psychological care. I really needed a trained clinical psychotherapist to really help. So she was on board early on.
How did you come up with that idea to include psychotherapy?
Mainly knowing what my limitations would be as a provider, and knowing where there would a big gap in care. I felt like it was that piece. From there we met a few times and just talked about what we thought the clinic would look like. I tried to see if there were any other models out there. And there really wasn’t much at all. So, we decided to just launch this and see how it goes.
I know this is the first in the U.S., but were you aware of the other clinics?
No, not until I went to PLIDA [Pregnancy Loss and Infant Death Alliance conference] and I was talking to Lindsey Wimmer from Star Legacy and she put me in touch with Alex Heazell [Senior Clinical Lecturer in Obstetrics and Clinical Director of the Tommy’s Stillbirth Research Centre, University of Manchester UK]. I talked with Alex last fall and got some ideas from his clinic. Anything I could find in the U.S. was mainly focusing on recurrent miscarriages. It would be a reproductive endocrinology or infertility clinic that specialized in recurrent miscarriages but not a true clinic to just focus on [pregnancy after loss].
When I talked to Alex, he was really helpful. A lot of what his clinic is doing is more medical interventions and screening. They do placental mapping, which isn’t something that I really have the capabilities to do as a general OB provider. It’s not something that is really widely done. I talked to our maternal fetal medicine and it’s not something they currently offer yet. What Alex is doing is a lot of cutting edge stuff. Hopefully once things are published that can be something more widely adopted.
As Julianne and I were brainstorming this clinic, initially we thought we should just keep it to pregnancy after loss but then I identified so much need for with people currently going through a loss or who have had a loss and are contemplating getting pregnant again. The more we talked we thought we shouldn’t really narrow [our focus] at this time. I’ve seen people with one prior miscarriage at 6 weeks and it’s destroyed their lives. We cast a really wide net and said anybody who’s touched by loss at any gestational age or loss of an infant or anywhere in the process, we want to be a resource for those people.
After this interview, the Hope After Loss Clinic delivered its first rainbow baby, Aayla, in September!