During Heidi's 20-week ultrasound a small growth was detected at the base of the baby's neck. In the face of a very rare diagnosis, it helps to have a team of caring and compassionate experts on your side.
That was one of the many important lessons Heidi and her husband, Nick, learned during their second pregnancy. During Heidi’s 20-week ultrasound, a small growth was detected at the base of the baby’s neck that her OB/GYN could not diagnose, and the couple was referred to a specialist.
“We were nervous about what was to come, anxious for answers and protective of our baby,” Heidi writes.
Unfortunately, Heidi recalls, the first team they met with offered only short answers and a roller coaster of misdiagnoses that resulted in more questions than answers.
“At our final appointment there, a new doctor came in with a worried look on his face,” Heidi writes. “With every minute that passed, we knew it was worse than we had thought. I kept repeating to myself, be strong for your baby.
“The doctor did an ultrasound of his own and began talking to us about what they were seeing. He told us it wasn’t just a thickness on our baby’s neck, but a growth — and a fast-growing one, at that.”
The doctor told the couple he didn’t know how the mass might affect their baby during development or after delivery. He felt their best option was to visit a hospital with the expertise and equipment to handle something this extensive.
Enter the SSM Health St. Louis Fetal Care Institute.
“Nick and I had decided we had to do everything we could to give our unborn son every fighting chance so we could bring him into our lives,” Heidi writes. “From our very first conversation with Kate Koenen at the Fetal Care Institute, we found the options, the sense of hope and the support system we’d been looking for.
“Just that simple 10-minute conversation changed our whole attitude about our outcome. It felt awesome to have people excited about our baby. To know you are in a ‘bad’ place statistically, and still have a medical team be optimistic and confident was a breath of fresh air. It felt like they accepted our baby as a baby and a welcoming ‘challenge’ instead of a hurdle to overcome.”
Through a series of tests, the team at the Fetal Care Institute narrowed the fetal diagnosis down to either a teratoma or lymphatic hemangioma, but couldn’t confirm the diagnosis until delivery. As the baby developed, Heidi had regular MRIs, fetal echocardiograms (echoes) and weekly appointments to monitor the baby’s well-being and the growth of the mass.
“We were calmly content with this answer. We knew, no matter the outcome, we were fighting for the best and had the best fighting with us.”
The team at the Fetal Care Institute helped Heidi and her husband celebrate small victories, such as a steady heart rate, a swallowing motion and constant blood flow around the mass to the baby’s brain. Even as the mass continued to take over the baby’s neck and the left side of his face, they were able to enjoy the joy every parent feels watching their baby grow to be otherwise stubborn and strong.
The Fetal Care Institute team delivered Heidi’s second son, Duncan, via C-section at SSM Health St. Mary’s Hospital - St. Louis at 37 weeks. Due to the mass’ growth, doctors were most concerned about a compromised airway but moments after delivery, a screaming Duncan proved them wrong. Duncan was monitored by a team of neonatologists in the operating room before being taken to the NICU at St. Mary’s Hospital. The mass was still undiagnosed — and even began shrinking all on its own.
A few days later, when Heidi was discharged from the hospital, Duncan was transferred to Cardinal Glennon for further testing. He underwent an MRI, which revealed that the mass had crept into his chest cavity but had not intertwined with his heart or other organs. Doctors performed a biopsy to diagnose the mass but ultimately sent Duncan home just 11 days after delivery.
“We were ready for months, even years, of time in the hospital,” Heidi writes. “Instead we left in less than two weeks with a healthy baby boy, with no official diagnosis.”
The biopsy results were sent to vascular centers around the country — doctors’ best guess is that the mass is something akin to, but not exactly like, a partial rapid involuting hemangioma.
“In a nutshell, we don’t know what exactly it is, nor do any doctors,” Heidi writes. “But Duncan is doing so well and has had zero medical interventions as far as medicine or surgery. We were in limbo our whole pregnancy, and even though we still don’t know, we couldn’t be happier about this outcome.”
These days, Duncan is closely monitored by his pediatrician and will follow up with an ENT or dermatologist if major changes are noticed. His mass continues to shrink.
Heidi says of her now one-year-old son: “He is the most calm and relaxed baby. He goes with the flow and if he is crying, it’s because he is hungry or tired. He is happy and loves his mom, dad and big brother, Marian. He loves to explore and dance, but by far his favorite thing to do is eat! The mass is in no way affecting his life — as of right now, it’s all cosmetic. We could not imagine our family without him!”
When asked what this experience taught her, Heidi writes: “That’s a hard one. I learned so much about me as a person and as a mom, and how strong I really am. I learned about my husband and our marriage — my rock through it all.”
“I would tell other moms facing a similar situation that, no matter the storm you are in, whatever battles you’re faced with, whatever lies ahead, you are not alone. Find a support system, then trust and hold onto them. Remember why you picked this medical team, this significant other, this friend, then listen to them and draw from their strength.
She continues, “When things get bad and you are getting the news from your doctor, don’t just focus on the first few scary words. Take it all in. Ask questions. Trust your gut. Embrace the good and celebrate small victories. These are the things that will carry you through.”
That was one of the many important lessons Heidi and her husband, Nick, learned during their second pregnancy. During Heidi’s 20-week ultrasound, a small growth was detected at the base of the baby’s neck that her OB/GYN could not diagnose, and the couple was referred to a specialist.
“We were nervous about what was to come, anxious for answers and protective of our baby,” Heidi writes.
Unfortunately, Heidi recalls, the first team they met with offered only short answers and a roller coaster of misdiagnoses that resulted in more questions than answers.
“At our final appointment there, a new doctor came in with a worried look on his face,” Heidi writes. “With every minute that passed, we knew it was worse than we had thought. I kept repeating to myself, be strong for your baby.
“The doctor did an ultrasound of his own and began talking to us about what they were seeing. He told us it wasn’t just a thickness on our baby’s neck, but a growth — and a fast-growing one, at that.”
The doctor told the couple he didn’t know how the mass might affect their baby during development or after delivery. He felt their best option was to visit a hospital with the expertise and equipment to handle something this extensive.
Enter the SSM Health St. Louis Fetal Care Institute.
“Nick and I had decided we had to do everything we could to give our unborn son every fighting chance so we could bring him into our lives,” Heidi writes. “From our very first conversation with Kate Koenen at the Fetal Care Institute, we found the options, the sense of hope and the support system we’d been looking for.
“Just that simple 10-minute conversation changed our whole attitude about our outcome. It felt awesome to have people excited about our baby. To know you are in a ‘bad’ place statistically, and still have a medical team be optimistic and confident was a breath of fresh air. It felt like they accepted our baby as a baby and a welcoming ‘challenge’ instead of a hurdle to overcome.”
Through a series of tests, the team at the Fetal Care Institute narrowed the fetal diagnosis down to either a teratoma or lymphatic hemangioma, but couldn’t confirm the diagnosis until delivery. As the baby developed, Heidi had regular MRIs, fetal echocardiograms (echoes) and weekly appointments to monitor the baby’s well-being and the growth of the mass.
“We were calmly content with this answer. We knew, no matter the outcome, we were fighting for the best and had the best fighting with us.”The team at the Fetal Care Institute helped Heidi and her husband celebrate small victories, such as a steady heart rate, a swallowing motion and constant blood flow around the mass to the baby’s brain. Even as the mass continued to take over the baby’s neck and the left side of his face, they were able to enjoy the joy every parent feels watching their baby grow to be otherwise stubborn and strong.
The Fetal Care Institute team delivered Heidi’s second son, Duncan, via C-section at SSM Health St. Mary’s Hospital - St. Louis at 37 weeks. Due to the mass’ growth, doctors were most concerned about a compromised airway but moments after delivery, a screaming Duncan proved them wrong. Duncan was monitored by a team of neonatologists in the operating room before being taken to the NICU at St. Mary’s Hospital. The mass was still undiagnosed — and even began shrinking all on its own.
A few days later, when Heidi was discharged from the hospital, Duncan was transferred to Cardinal Glennon for further testing. He underwent an MRI, which revealed that the mass had crept into his chest cavity but had not intertwined with his heart or other organs. Doctors performed a biopsy to diagnose the mass but ultimately sent Duncan home just 11 days after delivery.
“We were ready for months, even years, of time in the hospital,” Heidi writes. “Instead we left in less than two weeks with a healthy baby boy, with no official diagnosis.”
The biopsy results were sent to vascular centers around the country — doctors’ best guess is that the mass is something akin to, but not exactly like, a partial rapid involuting hemangioma.
“In a nutshell, we don’t know what exactly it is, nor do any doctors,” Heidi writes. “But Duncan is doing so well and has had zero medical interventions as far as medicine or surgery. We were in limbo our whole pregnancy, and even though we still don’t know, we couldn’t be happier about this outcome.”
These days, Duncan is closely monitored by his pediatrician and will follow up with an ENT or dermatologist if major changes are noticed. His mass continues to shrink.
Heidi says of her now one-year-old son: “He is the most calm and relaxed baby. He goes with the flow and if he is crying, it’s because he is hungry or tired. He is happy and loves his mom, dad and big brother, Marian. He loves to explore and dance, but by far his favorite thing to do is eat! The mass is in no way affecting his life — as of right now, it’s all cosmetic. We could not imagine our family without him!”
When asked what this experience taught her, Heidi writes: “That’s a hard one. I learned so much about me as a person and as a mom, and how strong I really am. I learned about my husband and our marriage — my rock through it all.”
“I would tell other moms facing a similar situation that, no matter the storm you are in, whatever battles you’re faced with, whatever lies ahead, you are not alone. Find a support system, then trust and hold onto them. Remember why you picked this medical team, this significant other, this friend, then listen to them and draw from their strength.
She continues, “When things get bad and you are getting the news from your doctor, don’t just focus on the first few scary words. Take it all in. Ask questions. Trust your gut. Embrace the good and celebrate small victories. These are the things that will carry you through.”
