At CHOP, an experienced team guides families through immeasurable loss. 

At CHOP’s Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment, a team with a rare level of insight and compassion is dedicated to preparing parents for the loss of their child prior to or shortly after birth. Here, parents Emily and Justin share their thoughts on the support that mattered most during their heartbreaking experience.

Emily and Justin were 20-weeks into their first pregnancy when an anatomy scan revealed something was severely wrong with their daughter Ellie’s heart. They were referred for an evaluation at Children’s Hospital of Philadelphia (CHOP), where fetal specialists from the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment (CFDT) and the Fetal Heart Program (FHP) work hand in hand to provide a clear diagnosis and path forward for families facing congenital heart defects.

The evaluation at CHOP included a fetal echocardiogram, which is an ultrasound of a baby’s heart. After the evaluation, fetal cardiologist and FHP Director, Jack Rychik, MD, and his team, including an advanced practice nurse and a perinatal social worker, met with the couple to explain the diagnosis — hypoplastic left heart syndrome (HLHS) — and the possible pathways to treatment.

A devastating diagnosis

HLHS is a severe condition that requires multiple surgeries after birth and often medication to restore normal heart function. Even with these treatments, children with HLHS often have lifelong complications and some eventually need a heart transplant.

In addition to that condition, Ellie had an intact atrial septum, the absence of a hole in the wall (septum) that divides the upper chambers (atria) of the heart. The hole is normally present and is critically important to allow for blood to return from the lungs to the heart. The absence of this hole is rare, and when seen in combination with HLHS, is unfortunately life-limiting.

Dr. Rychik told the couple that Ellie would likely not survive long after she was born. She might be alive for just a few minutes or a few hours. Emily and Justin were beyond heartbroken.

“We went into that week thinking everything was fine, and by the end we’d found out she had a heart defect and wouldn’t survive,” says Justin.

Supporting families and helping them create a plan

The loss of Ellie shortly after birth was devastating for Emily and Justin. But they are grateful for the support and compassion the CHOP team provided them from that first appointment through Emily’s prenatal course and the time of Ellie’s birth and her short life.

“We felt like we were in the best hands,” says Justin.

The FHP team referred the couple to the CFDT’s Perinatal Palliative Care and Bereavement Program led by CHOP psychologist, Joanna CM Cole, PhD, PMH-C. The palliative care team and FHP team worked together to develop a support care plan for the couple prior to and after Ellie’s birth and death.

Emily and Justin met with CFDT Chaplain, Laura E. Palmer, MDiv, BCC, who provided spiritual support during the pregnancy and beyond birth. They had regular therapy sessions with Dr. Cole, who helped them process their emotions around the diagnosis. She worked with them to formulate a plan for Ellie’s birth, tailoring every detail to what they wanted, even down to the music played during Ellie’s birth. Child Life specialists met with the couple to describe the memory making process and come up with a plan for creating keepsakes after the birth.

Dr. Cole added every detail to the birth plan, which she wrote up and added to the family’s medical chart. She and FHP social worker, Lucia Figueroa, MSW, LSW, discussed the couple’s wishes with the rest of the care team, so everyone was on the same page.

“In the beginning, I wondered, ‘How are people who go through this not just always distraught,’” says Justin. “And it’s because they have a plan.”

Thinking about the future — e.g., the birth and Ellie’s death — was overwhelming for the couple. The medical, nursing and psychosocial teams helped them remain present in their experience and take it one day at a time. Emily and Justin were encouraged to be present during the pregnancy and take advantage of that time by making memories they would be able to look back on.

“It was overwhelming, but we knew we had that time to spend with our daughter,” says Justin. “This was Ellie’s life, and we wanted to make the most of it. Making the most of every day helped us process it.”

They read books to Ellie, vacationed at the beach and other favorite destinations, and visited the park where they got engaged.

“Looking back, we are so glad we did that,” says Emily. “Now we can say Ellie was here with us. It’s a little connection that we have. It’s not how we thought it was going to be but being able to look back on it and recall those memories together is comforting nonetheless.”

Making memories that last a lifetime

Ellie was born in the Garbose Family Special Delivery Unit (SDU) on October 6, 2020. She lived for 13 hours. Her birth plan involved perinatal palliative care until she passed away naturally. Emily and Justin were able to hold Ellie during the C-section, have her baptized, bathe and dress her, and introduce her to their family members.

The SDU nurses helped Emily breastfeed Ellie, and Child Life specialists helped the couple create keepsakes like Ellie’s footprint molds.

“We felt really lucky to be able to deliver at CHOP,” says Justin. “The fact that they all know how to handle this situation was surprising in the best way. When these terrible events happen, there is a team that has experience with them that helps families put a plan in place.”

Sharing their experience to further Ellie’s legacy

In a difficult pregnancy or with a new baby with complex medical needs, there are often moments parents feel overwhelmed by their feelings. Below is some advice from Emily and Justin to help other families in their situation. Sharing their story and the advice below, they say, is a way of carrying on Ellie’s legacy.

• Take it one day at a time. “That’s something Ellie taught us,” says Emily, “Take each day as it comes. You never know how much time you have, and you have to make the most of what you get.”
• Look for a team that provides holistic care, including both specialized medical care as well as emotional perinatal support.
• Make as many memories as you can in the time that you have. “We were able to take a lot of pictures, not only when we were pregnant but also when she was born,” says Emily. “That time is just so special to us, and now we can look back on it. Despite the short time we had with her, her life feels really full.”
• Think about what is important to your family and include it in a perinatal palliative care birth plan.
• Be patient and loving toward yourself and your loved ones.
• Talk about your thoughts and feelings with your partner, family members and other supportive loved ones. “It’s overwhelming, individually, to get a diagnosis like this,” says Justin. “Keeping the communication lines open is crucial.”
• Let others in to support you. “We really let our families in and told neighbors,” says Emily.
• Create a meaningful legacy for your child. Ellie is a big part of Emily and Justin’s lives and they make sure that the people around them know that. They have pictures of her throughout their house, talk about her often, and continue Ellie’s legacy by sharing her story with others.

“Nothing can prepare you for the grief of losing a child the way that we lost our baby,” says Justin. “But it was comforting to know that CHOP has a team that is willing and able to help you with these situations. We’ll be forever grateful for CHOP.”