CDH International’s featured patient of the week is CDH survivor Mila Shick. Mila is the daughter of Madison Zito and Mike Shick. Mila is a CDH warrrior! She has reherniated three times since she was born in 2019, she has overcome so many hurdles including FETO and ECMO and six months in the hospital. Mila’s mom, Madison, had this to share about her inspirational journey:
“On December 4, 2018, my fiancé and I learned we were expecting our second child, Our Miracle baby, Mila. We were thrilled! Then in April of 2019, during our 20-week anatomy scan the ultrasound tech told us she could not get a clear picture of baby’s heart so the doctor would need to come in and take a look. After waiting for what seemed like forever, the doctor walked in and showed us a picture of Mila’s stomach in her chest cavity. Our hearts sank. Her diaphragm contained an abnormality which allowed the stomach to travel up into her chest cavity. This condition is called Congenial Diaphragmatic Hernia (CDH). Our maternal fetal doctor gave us three options: let the pregnancy naturally take its course, abort, or transfer care to Cincinnati Children’s Hospital. Cincinnati Children’s is well adept in CDH treatment. We wanted to give our daughter the best chance at life, so transferring care to Cincinnati was a no brainer for us.
Once transferred, our team of doctors started routine ultrasounds and fetal MRI’s to keep an eye on the development of her lungs. The plan for the remainder of the pregnancy was to routinely monitor Mila’s lung to head ratio (LHR), compared to what a “normal” baby’s measurements would be. As time went on, her condition became more severe. Her spleen, bowels, and a portion of her liver had migrated into her chest cavity. Due to the extra organs in her chest, her lungs were becoming more compressed than when she was first diagnosed.
During a routine check on June 6, 2019, Mila’s LHR had dropped from 35% to 24%. A 24% LHR is considered a severe case of CDH, which puts her survival rate around 30-50%. The change in LHR qualified her for a trial, in-utero, procedure called FETO (fetoscopic endoluminal tracheal occlusion). FETO is a minimally invasive procedure, where a rice sized balloon is placed into the fetus’ trachea. The general idea of this experimental procedure is that the balloon will allow pressure to build up in the developing lungs, allowing them to push back against the encroaching abdominal organs. Once the lungs have reclaimed the space they are supposed to have, further development can occur. She was the 5th candidate to receive this trial procedure at Cincinnati Children’s. There are only a total 6 hospitals in the United States who have done this procedure. The surgeon who performed this procedure had been doing FETO for 17 years in Spain. He brought his knowledge and the procedure to the States in hopes to get it FDA approved.
On June 8th, Mila and I underwent the FETO procedure. I was placed on strict bedrest the entire time the balloon was in place, in order to prevent pre-term labor. About 4 weeks after the FETO procedure, the team was concerned I was close to laboring. The decision was made to admit me to the fetal care center at Cincinnati Children’s for the remainder of the pregnancy to ensure I was in the hospital when the time came for Mila to be born.
My water broke after two and a half weeks of being in-patient, with the balloon still in place. The team informed me that it would be beneficial for Mila, if the balloon could be removed without delivering right away. Some additional time in the womb without the balloon would allow the lungs to be flushed and “wake up.” I was immediately taken down to the operating room, where the team, successfully retrieved the balloon without delivering. However, twelve hours later I went into active labor and it was time to deliver. I had a special delivery called an “exit to airway.” Exit to airway is a procedure where the baby is partially delivered and intubated while still on placental support. Once successfully intubated, the ambilocal cord is cut. She was then sent straight to the NICU.
At 2 days old, Mila took a turn for the worse. She was placed on ECMO (extracorporeal membrane oxygenation), which is a form of life support specifically for the heart and lungs. While on ECMO, she was very yellow. This was a huge concern for liver failure. Her nurses were not optimistic that she would survive this. Liver failure while on life support is usually fatal. She remained on ECMO for 17 days until her lungs grew strong enough to support her own life. Her NICU stay was a rollercoaster. There were good days, bad days, and then there were really bad days. She spent from July 17th, 2019 through November 6th, 2019 in the NICU. She had many, many surgeries during that time.
After finally coming home, she was hospitalized again a month later, on December 28th, 2019. Her diaphragm had re-herniated. Mila had several bowel loops back in her chest cavity. Once again, we had to re-locate our entire family to Cincinnati. The Ronald McDonald House was full so we had to stay in a hotel for the duration of her hospitalization. After Mila recovered from surgery to repair the hernia a second time, she was released from Cincinnati Children’s on January 26th 2020.
About 1.5 months later, on March 12, 2020, a follow-up appointment revealed that Mila had once again had re-herniated and would need to be hospitalized again. Her doctors said they have never seen this many re-herniations in a CDH patient before. With the Covid-19 pandemic emerging in the area, this hospitalization would turn out to be our hardest one yet. The Ronald McDonald house had to “close down” to new families, and once again, our family had to stay in a hotel for the duration of Mila’s hospitalization. Once again, Mila needed surgery to repair her diaphragm. This surgery was the biggest surgery she has had at this point. The surgeons had found that her liver and spleen had fused together and were compressing her stomach, as well as putting a lot of pressure on her diaphragm. They had to separate the 2 organs and move her stomach into the correct spot (again). Mila had a really hard recovery that included multiple infections (especially in her lungs). After she finally recovered, we were sent home. We spent from March 12th-April 17th in the hospital and have been home ever since.
Mila is now thriving and doing phenomenal things. We just celebrated her 1st birthday which is huge. Nobody was sure she would make it in the beginning. She is still fed through a G-tube, but she just started working on eating orally! She has met a lot of physical milestones as well. This is a huge deal since she was sedated for such a long time. Being sedated for an extended period of time can cause serious mental and physical delays. Also, because of ECMO, she had several brain bleeds that contributed to developmental delays. We have been working with her so much and she has an amazing big sister that helps her catch up quickly! She is truly a miracle baby and I love getting her story out there! This entire process has put a huge mental and financial strain on our family, but it brought us closer together and we are a stronger family because of it. I wouldn’t change it for the world.”
To read more about Mila’s journey and her FETO procedure and care at Cincinnati’s Children’s Hospital, please visit, https://www.cincinnatichildrens.org/service/f/fetal-care/patient-stories/mila-cdh-feto