Marley's Angels - Support Marley's Medical Journey

Hi. My name is Sarah Bahn. About two years ago, my husband, Steve, and I were blessed by the arrival of our beautiful little girl, Marlena (Marley).

Marley’s birth was something that we had hoped for, for years. The frustration of not getting pregnant and several failed fertility attempts weighed heavily on us. In March of 2022, we finally received the wonderful news we had been praying for. We were beyond thrilled to grow our family and meet our newest addition that fall!

After a relatively “normal” pregnancy (and 41 weeks later!), Baby Bahn seemed to have no intention of joining us and therefore I was induced. After 36 hours of labor, we decided to move forward with a C-section. We welcomed Marlena Marion Bahn on November 30th, 2022, at 10:30 PM. She came in at a whopping 8lb 14oz and 22in long!

It didn’t take long for Steve to realize that Marley had some complications that required specialized attention. Her appearance included more concerns than a long labor period would explain. Her breathing was labored and her hands didn’t look right. While I remained on the delivery bed and waited to meet our little girl, Steve stood with the nurses and wondered if everything was ok. The entire medical team was amazing. They did everything they could to care for our little girl, and took care of us as well. While they tried to answer questions, the fact was they were not exactly sure why our little girl was born in the condition she was in. After three days filled with love, concern, and tears, we moved to the NICU at Lurie Children’s Hospital in Chicago.

We met with another amazing team of medical professionals over the next few days and provided as much love as possible to our little girl. The team did everything to support her medically, and answer our questions. Many tests were performed over the first few days, and we eventually learned that Marley was born with a rare genetic condition called Apert syndrome.

There are many possible issues associated with Apert. Some of Marley’s most significant include her coronal sutures being fused prematurely, as well as the fusion of her fingers and toes. The fusion of the coronal sutures impacts the shape of her skull resulting in breathing and eating difficulties, cranial pressure, and it can impact vision and hearing. This fusion also prevented her from joining in the world back on November 30th. Her skull simply wouldn’t move as it was supposed to in order to come out. We thought this was stubbornness. In the end, nothing could be further from the truth. She wanted to be with us. She just needed some extra help getting there. We are aware of some of Marley’s medical needs now, while others will not be determined until she gets older.

Steve and I are so grateful to the medical teams at Silver Cross Hospital (New Lenox, IL) and Lurie Childrens’. These amazing individuals will always be our heroes. The reality is, Apert Syndrome is extremely rare. When dealing with such a unique condition, it is vital to have the most knowledgeable team with which to work. Because of this, Steve and I decided to research the best options for our little girl and eventually decided to work with the Craniofacial Team at the Children’s Hospital of Philadelphia (CHOP). This hospital and team was highly recommended from numerous other Apert families, and from our first interaction with the group, we completely understood why.

Having a craniofacial condition such as Apert syndrome requires surgical intervention, especially in the first few years of life as preventative measures. Our daughter’s condition since birth has caused breathing issues, as well as great concern related to future development. In Marley’s two years, she has had several procedures to address many of these conditions. These operations have included two skull surgeries to correct the premature fusion of bones, creating more room in her skull to allow for proper brain growth and development. Additionally, she has had two surgeries to separate her fused fingers. All of her procedures have taken place at CHOP and therefore required travel to and from Philadelphia . Each trip included costs beyond the medical payments, such as airfare, lodging, and meals. We have been fortunate to stay at the Ronald McDonald house during some visits, but sadly the need for this lodging is so high that rooms are not always available. Our decision to bring Marley to CHOP has not wavered. The team at CHOP has taken excellent care of our daughter and we are extremely grateful for her health and the opportunities they have provided her to continue to grow and develop.

When I was pregnant with Marley, we understood I would deplete my sick days while on maternity leave. We had a plan in place for that. Marley’s condition obviously changed our original plan. We were unaware of Marley’s diagnosis until after birth, and therefore could not have anticipated the amount of time we would need to take off work to care for our daughter and bring her to the various doctor and therapy appointments. All of this extra time off work has resulted in additional financial burden.

While going back to work was challenging, we were once again fortunate to have family support us with childcare needs and in other areas. Unfortunately, the following school year was even more difficult. While my sick days were depleted, Marley’s medical appointments and therapy needs increased. This time frame required me to take even more time off work as Marley underwent her posterior vault distraction and second finger operation within those months. Although this skull surgery is a relatively common procedure for children with Apert and performed frequently at CHOP, it was terrifying for us. Having almost a centimeter of bone cut out of your 9 month old’s skull is unthinkable. Having metal brackets installed to separate the plates in her skull seems fictional. For the next several weeks, we manually turned these brackets in our daughter’s head to create necessary space. We could not send our little one to a childcare facility during this time. This was way more than changing dirty diapers and wiping a nose. This time off work added to the financial stress of our family, but it was all necessary for our princess.

We are a proud family and have worked very hard to provide the best medical care for our daughter. There are some guaranteed procedures with Apert syndrome, such as Marley’s skull and finger separation surgeries. We planned for those, although I am not sure parents can ever really plan for this life change. We could not plan for the unknowns from which we have not been able to recover. The unknowns have added to ongoing medical bills from the past two years, and the need to continue taking time off work with no accumulated sick days. Some of the unknowns have included recurring eye issues which Marley has experienced over the years, the need for ear tube surgery, specialty shoes and a communication device. We also have a plan for upcoming procedures, but there is no guarantee that the timeline will remain the same and that nothing else will arise. Early on we understood that Marley’s physical appearance looked different. We have come to better understand that her internal makeup is different as well, and will most certainly come with challenges and a need for medical attention.

Steve and I would like to thank all of you for reading our story and learning more about our little girl. These past two years have been filled with a wide variety of emotions. The greatest has been the love we have for Marley. We are so proud of her, her progress, and her fight! These past two years have taught us a lot. We are extremely grateful for all the support we have received, but as a result of the financial hardships our family has, and continues to experience, we have decided to reach out further and ask for support. We have been hesitant to take this step and have attempted to handle these challenges on our own. We have now agreed to humbly ask for help from our community. The money earned from this fundraiser will support Marley’s medical needs - past, present, and future. We know how deeply loved and cared for Marley is and we appreciate any aid we will receive.