Molly is an ornery, joyful, and strong two year old girl from Celina, OH. Her favorite things are music, swinging, and being with her family. Molly encompasses what it means to persevere. She wakes each day ready to work hard and face challenges head on. Molly’s life has been met with many challenges and hardships, but she always keeps her focus onward and continues to shine through her obstacles.
Other than being constantly sick throughout her whole pregnancy and the baby being breech, Jessica had a very typical pregnancy. A few weeks before the scheduled c-section, Jessica’s OB had a family emergency and had to leave town, so Jessica’s remaining routine appointments were with a new OB. This doctor noticed that Jessica’s fluid levels were higher than he wanted them to be, and although they kept Jessica’s c-section scheduled for 39 weeks, Jessica and Kevin were told that if her water broke she was to rush to the hospital immediately.
Jessica’s pregnancy continued without her water breaking and when she hit 39 weeks her and Kevin went in for the scheduled c-section. The c-section went smoothly up until the time that Molly was born. Jessica says that “I remember them saying, ‘Dad, do you want to stand up and look and see what the baby is?’ They pulled the baby out and Kevin said it was a girl and after that the tone of the room was just fear. There was fear throughout the entire room.” She continues, “I just remember waiting for that cry and that cry never came and it actually didn’t come for awhile.” The nurses immediately began working on Molly. At one point Jessica recalls the nurses tapping Molly’s foot and pleading with her to pull through. They then rushed her out of the room and Jessica yelled for Kevin to stay with the baby. “I laid in the c-section room, on the operating table getting stitched up for what felt like an eternity. I had no idea if my baby was okay or what was going on. I was scared,” Jessica admits.
Meanwhile, Kevin did his best to stay as close to the baby as possible while several nurses and doctors were struggling to get her to breathe by attempting to intubate her. After many stressful minutes they were able to successfully intubate her and made plans for her to be transferred to a children’s hospital in Dayton, Ohio. Kevin followed the ambulance to the hospital while Jessica had to remain back for three days to recover from the c-section.
After three days Jessica was discharged and she joined her husband at the children’s hospital where she met her daughter for the first time. They spent 19 days in the NICU with Molly and she left with a diagnosis of persistent pulmonary hypertension, which is defined as the failure of the normal circulatory transition that occurs after birth. During her time in the NICU Molly was having trouble meeting her daily food volumes and they worked on ensuring she was receiving necessary nutrition. Two days before they were discharged they were able to successfully remove her tubes, cords, and any machines that were attached to her and head home. Jessica shares, “We walked out of there and we honestly thought it would be the last time we were ever in there.”
Jessica and Kevin settled in at home and learned to navigate life as first-time parents. They experienced three months of stability and then headed back to Dayton for a routine follow up appointment with several of the doctors who worked with Molly during her time in the NICU. Their first appointment was with speech pathology. Jessica and Kevin were especially excited for this appointment so they could show the speech therapist how well Molly had been eating and how far she had come. Jessica shares, “I remember feeding Molly on my lap and the speech pathologist observing her with a look in her eye that something was not right.” Immediately following Jessica’s demonstration of Molly eating, the speech therapist asked if it would be okay to conduct a swallow study that day. The therapist was concerned that she was hearing some wetness in Molly’s suckling and the swallow study would show how she was swallowing and where the milk was going. The swallow study was completed later in the day and with tears in her eyes, the speech therapist told Jessica and Kevin that she was so sorry, but the results showed that Molly was silently aspirating nearly every feed. Kevin shares, “About 10% of every swallow was going into her lungs.” They were immediately admitted into the hospital where Molly received a feeding tube. They were not provided with clear answers as to why this was happening and were told it could be due to the fact that she had a rough start to her life by being intubated as a newborn.
Once Molly was discharged from this hospital visit, they returned home and started their new normal. They quickly adjusted to the feeding tube and felt grateful for it and the nutrition it was providing Molly. Throughout all of this they began to notice that Molly was not meeting milestones that other typical children were meeting. As time went on, they also began to notice that she was showing some odd movements and holding in her breath at times. They decided it was time to take her into to see her pediatrician to make sure everything was okay. At the appointment Jessica provided the doctor with video showing Molly’s movements and charts that showed how frequently the episodes were happening. The doctor took one look at them and told Jessica and Kevin that they needed to get to the children’s hospital immediately. She was unable to provide a name or a diagnosis to what she thought was going on, but said it was an emergency.
They were admitted to the hospital right away and Molly had several tests performed on her. A short while later, a doctor walked into their hospital room and told Jessica and Kevin that the EEG revealed that Molly was seizing almost constantly. “Both of us just sunk to our knees,” Kevin shares. The doctor continued to explain that her seizures are called infantile spasms. After this hard news, they were told that the MRI results were consistent with Dandy Walker Syndrome, which is a congenital brain malformation involving the cerebellum and the fluid filled spaces around it.
Jessica and Kevin had never heard of Dandy Walker Syndrome and their doctor specifically told them to not google it; to this day Jessica and Kevin have never looked it up on the internet. “The doctor said it covers a wide range of things and if you look it up you are going to see the worst of things and we don’t know what Molly has in store and we don’t know what the future holds,” Kevin explains. The doctor explained that the best treatment for Molly would be physical therapy and so they decided to focus on daily physical therapy for her, as well as medication that has shown very positive results for Molly. Throughout this hospital stay they also learned that while she was sleeping her stats were dangerously low so she was placed on 24/7 oxygen.
Jessica and Kevin left the hospital with Molly and heavy hearts. This was not the life they had planned for their baby girl. They allowed themselves to grieve, but were determined to look onward with excitement and anticipation for their daughter because they knew she was meant for great things. Kevin shares, “Our main job is to be her advocate and whatever life throws at you, alright, you take it on and move on. With each diagnosis or hospital stay we are going to give ourselves that day to mope around and feel sorry for ourselves, but after that we are done.” Jessica adds, “This little girl is still smiling. She’s giving it her all. I am not going to sit here and pout about this. This girl is our life and our future. She is our everything and nobody gave up on me so I am not going to give up on her.”
Today Molly is doing very well. She was recently taken off her main seizure medication and placed on a less intense seizure medication. She has also recently been taken off her oxygen. Jessica, Kevin, and Molly are a perfect team who push and encourage one another to always look ahead. They adapt in order to provide Molly with the happiest life possible. Although the hard days still come, they cannot overpower their joy, happiness, and determination.
Time to get loud shouters!
Throughout the month of May we will be shouting love for Molly and her family. It is a great honor to be able to tell Molly’s story and we hope you will join us in getting to know her and her family.
Join us in shouting loud for Molly!