(See the final article layout on pages 46-47 here.) Little Ennsley was born in Phoenix, AZ in July 2018 and was welcomed by her mom, dad and 9 other brothers and sisters. Although Kiera, Ennsley’s mom, had gone through 9 other pregnancies, including 6 cesarean sections, her pregnancy and delivery with Ennsley was different.
During a routine prenatal visit, doctors in Phoenix alerted Kiera that they detected an abnormality in Ennsley’s lungs. They couldn’t confirm if it was an underlying genetic condition, but they told Kiera and her husband an ultrasound indicated that Ennsley had fetal pleural effusion – a condition where there is abnormal accumulation of fluid in the chest. The condition is relatively rare (occurring in anywhere from 1/10,000 to 1/15,000 pregnancies) and sometimes even resolves on its own. Following careful imaging and with ongoing monitoring, the family navigated the diagnosis and Ennsley was born full term and soon discharged from the hospital.
THE PATH TO TREATMENT
At Ennsley’s two week checkup, Kiera was insistent that the pediatrician watch video she recorded on her phone of Ennsley’s breathing (Although not always present, Kiera had seen many instances where her daughter’s chest appeared to sink in with a series of breaths, indicating that her daughter was experiencing respiratory distress). Following the visit, they were sent to the ER. At the ER, a chest-x-ray was done and medical teams found that the plural effusion (seen in pregnancy) was cleared but Ennsley had a mass inRoute around the same lung.
When Ennsley was three weeks old, doctors suggested that the mass be taken out when Ennsley turned 6 months, so she would have a bit more time to grow and strengthen before the invasive surgery. Over the next few months, the doctors were also working to rule out other diagnosis. At 6 months, following an MRI and CT scan, the doctors noted that the mass looked like a solid tumor and began working to rule out neuroblastoma – a cancer that develops in embryo or fetal nerve cells. Two other diagnoses the Phoenix physicians considered were that the mass was a Congenital Pulmonary Airway Malformation (CPAM) whereby a benign cystic mass grows in the chest or Pulmonary Sequestration – a piece of lung tissue that develops in utero but does not attach to the pulmonary arterial supply and fails to support breathing.
Early tests showed that the mass was most likely not a neuroblastoma but medical teams needed to rule out the diagnosis so Ennsley’s Phoenix area medical teams biopsied the mass. During the biopsy, Ennsley ended up with internal bleeding. This meant Ennsley needed time to heal before surgeons went in to remove the mass.
When Ennsley was about 9 months old, she returned to the Phoenix area hospital and doctors did all they could to remove the mass. However, three months later, a chest xray revealed a significant portion of the mass was still present.
FINDING THE RIGHT TREATMENT
Kiera turned to other moms who had children with a CPAM diagnosis. She flew out to Philadelphia with Ennsley when Ennsley was 8 months old. They met with experts in Philadelphia, but eventually learned about Dr. Steve Rothenberg, pediatric and fetal surgeon at Rocky Mountain Hospital for Children. Dr. Rothenberg is a world leader in minimally invasive surgery for complex congenital conditions like Congenital Diaphragmatic Hernia (CDH), Esophageal Atresia (TEF) and Congenital Pulmonary Airway Malformation (CPAM) – the condition Ennsley had.
“The difference between Dr. Rothenberg and other doctors is the confidence I had that he knew what he was doing, said Kiera. “I know the other doctors are doing their best but Dr. Rothenberg really knows what he is doing. I knew he understood her diagnosis and with him, Ennsley was in the best hands.”
Ennsley and her parents flew from Phoenix to Denver on a Thursday in early January. Ennsley had surgery the day they arrived – and because Dr. Rothenberg performed the surgery using a minimally invasive approach, even though the CPAM was very complex in nature due to the previous attempt to remove it, Ennsley was released from the hospital day one post op and flew home four days later – after enjoying some of Denver’s sights and sounds.
Today, Ennsley is back home with her parents and 9 other siblings. The mass in her chest is gone, but her family is amazed that at only 18 months old, she has already been to four hospitals in three states. Kiera adds, “But, the teams at Rocky Mountain Hospital for Children were definitely the friendliest of them all.”
[SIDE BAR ARTICLE]
A Hospital Like No Other
Although Ennsley came to Rocky Mountain Hospital for Children in Denver, CO after an initial diagnosis, in the last 5 years alone, more than 124,000 patients have been referred to our Center for Maternal Fetal Health for evaluation when there is concern that a pregnancy is high risk.
Our Center for Maternal Fetal Health teams understand that being diagnosed with a high-risk pregnancy can be emotionally and physically difficult. From the moment you meet our physicians and experience our personalized care coordination, you’ll know why patients travel from across the Rocky Mountain Regiona and beyond for care by our specialists.
Located in Denver, CO, RMHC is home to the only hospital in the Rocky Mountain region with both a Level IV NICU and a Level IV Maternal Program – so both high risk moms and babies can be cared for under one roof.
Whether you are looking for a Maternal Fetal expert or to learn more about Neonatal Minimally Invasive Surgery options, visit: CenterforMaternalFetalHealth.com or call: 720-754-RMHC (7642).