After Treatment for BPS, Leonie and Her Family are Breathing Easier
At just 28 weeks, Libby had an uneasy feeling about her pregnancy with her daughter, Leonie. She felt her stomach was measuring much larger than it should be at this point in the pregnancy. To ensure everything was okay with Leonie’s health as well as Libby’s, she went for an emergency ultrasound. “I started feeling sick because I knew something was wrong,” Libby said.
Libby was right. There was an alarming rate of fluid building up in Leonie’s chest and abdomen, as well as Libby’s uterus. An abnormality was found during the ultrasound. “My whole life had changed in 24 hours,” Libby said. The next step was having a fetal MRI done at Lurie Children’s and The Chicago Institute for Fetal Health to get a closer look at the mass on Leonie.
Following the MRI, Dr. Aimen Shaaban, along with the fetal care team sat down with Libby and her husband, Christian, to explain what was going on with their baby. “They told us they were building a theory through the images and made it more simplistic for us to understand,” Christian said. Leonie was diagnosed with bronchopulmonary sequestration, known as BPS for short, with non-immune hydrops. BPS is an abnormal mass in the chest cavity, which causes heart failure. Non-immune hydrops is the cause of the fluid build-up inside of Leonie and Libby. “Basically, this meant Leonie was dying inside of me,” Libby said.
“Dr. Shaaban walked us through everything. He would always make sure we were completely included in the conversations with doctors and professionals,” said Christian. “The fetal care team went over all the scenarios with us and continuously interacted with us to get us prepared.” Libby and Christian decided the best option for them was to treat Leonie with a fetal thoracoamniotic shunt to drain the fluid from Leonie.
Right before Libby was about to undergo this surgery, Dr. Shaaban had noticed Leonie has been making progress draining the fluid on her own and opted to not follow through with the surgery for the sake of the baby’s health. The non-immune hydrops was gone. Leonie’s diagnosis was now just BPS. For Libby and Christian, this news was a relief. “We never knew if we could celebrate because we did not know what the next day would hold,” said Libby.
To drain the remaining fluid in the baby’s chest, Libby had a fetal thoracentesis. Approximately 70 milliliters was drained from the baby’s chest and one and a half liters of fluid were drained from Libby’s uterus. Thankfully, this procedure did not have to be repeated. Things appeared to be looking up for the Domnik family.
It was finally time for Leonie to come into this world. Leonie made it full term, as Libby was induced at 37 weeks. Immediately after birth, Leonie was transferred to Lurie Children’s to monitor the mass and her overall health. “I’ll never forget the day after Leonie was born. Dr. Shaaban came into our room to say how happy he was for us. It was like a friend coming in to visit, not a doctor,” Christian said.
The last step in Leonie’s journey was to remove the mass from her lungs. When she was 4 months old, Dr. Shaaban removed the mass, leaving Leonie with no impact except a scar. Libby still recalls the reassuring words Dr. Shaaban said to her before surgery. “We don’t need to be dwelling on the negatives. Looking at Leonie is all the proof we need.”
Leonie is now seven months old and healthy as can be. She just had her last check up with Dr. Shaaban. The bond the family has formed with Dr. Shaaban is something they will cherish for the rest of their lives. Libby and Christian’s favorite moment from this experience was when Dr. Shaaban revealed Leonie was a girl. They are forever grateful for all Dr. Shaaban has done for their family.
Leaving Lurie Children’s was a bittersweet feeling for Libby and Christian. “I feel like I graduated from the worst time of my life,” Libby said. “We couldn’t be any more lucky and unlucky at the same time.”
At 19 months old, Wesley was diagnosed with a rare, genetic disorder called Hunter Syndrome. His parents moved to Chicago to pursue the best possible treatment option - a revolutionary clinical trial with Dr. Barbara Burton.
Alexa Tannous, one of the physician assistants (PA) in the Heart Center’s cardiovascular and thoracic surgery, shares these details and more on the integral – and emotional – process of safely transporting these precious organs.
Kelin had a large vascular lesion in her throat that was growing and needed to be surgically removed and came to Lurie Children's state-of-the-art pediatric Robotic Surgery Program.