Maddie's Story

Madelyn Mary Lippitt was born on August 28th, 2006. She is the twin sister of Luke Lippitt and also has two older brothers; Nathan who is 7 and Zachary who is 5. Maddie has endured a long struggle from the early fetal stages of her life up to and including the present. While her future is unknown, her story has been one of inspiration and we would like to share it with you.

I think Ann and I will forever remember the first time we saw Maddie at our 19 week sonogram. The tech first saw Luke and told us it was a boy (our third) and we were just as happy as we were for the predictions by previous techs that Nate and Zack were boys. And then she saw Maddie; "it's a girl". Wow, a daughter. Immediate thoughts of "daddy's little girl" and "mommy's little angel" consumed us. One of the happiest moments of our lives. As the tech spent more and more time examining Maddie the mood quickly dampened and happiness turned to sadness when a doctor came in and told us there were some issues she was seeing that were not good at all. She felt strongly that Maddie had some kind of chromosomal defect and ran some tests. We waited 10 days for the results, the longest 10 days of our lives. The results came back negative for any kind of chromosomal abnormality, yet the specialist maintained that there were too many signs from that sonogram as well as future sonograms to indicate otherwise. So a very long pregnancy ensued. It was a pregnancy of mixed emotions and a roller coaster of ups and downs. On one hand there was as far as a sonogram could indicate a very healthy boy and on the other hand a very unhealthy girl. So many questions racing through our heads, was the doctor right, maybe Maddie will be just fine, what if she's not fine and how bad can this be?

Moments after their birth in the wee hours of a Monday morning our fears were confirmed. Luke was completely healthy and Maddie visually had some very obvious problems. Prior to their birth we met with some genetic specialists who presented us with a couple of different syndrome scenarios based on the pictures they had viewed from the sonograms. She might not live through delivery; she might not live longer than 48 hours after delivery were the outlooks of 2 of the 3 syndromes we were presented with. Maddie was quickly whisked off to the Neonatal Intensive Care Unit where she would spend 73 days before coming home. She was born with severe contractions of all her joints, 2 dislocated hips, rocker bottom feet, a diaphragm that was not functioning properly which prevented her from taking a full breath and required supplemental O2, scoliosis which caused further complications of her breathing and severe reflux that made aspiration an everyday possibility. Genetic Doctors linked all these issues to a freak genetic mutation. She had several surgeries during her 73 days in the NICU to fix some of her issues but as time progressed none proved to be successful. Prior to leaving the NICU a feed tube was surgically placed through the exterior of her stomach into her actual stomach so she could receive feeds. She just couldn't eat orally. To say the least, we had a long road of sleepless nights in front of us.

Maddie came home on November 9th, 2006. With our heads spinning we began to learn a daily routine that would benefit a special little girl with some extra special needs. Slowly the spinning slowed down as caring for Maddie became a normal routine. There would be numerous physical, occupational and speech therapy visits on a weekly basis as well as lung doctor visits and feed clinic visits. Also mixed into the weekly schedule were chiropractic and massage therapy. The complexity of the dozen or so extra steps it took to get her through the day as opposed to the boys became second hand to us. Feeds however remained a struggle. It took us almost 2 years of trying this and trying that to find a feed schedule that Maddie could tolerate as far as keeping food down. It has always been a delicate balance of when to feed her and when to give her stomach a break so as to protect her from aspirating.

Over the course of the first 2 years of her life, Maddie had hospital stays of 12 days and 4 days in addition to her first 73 days due to illnesses. Common colds have always had the potential of wreaking havoc on her body and twice it landed her in the hospital. We have always been very protective of her when it came to keeping her away from viruses.

We had begun to look into a couple of different options for surgeries that would hopefully get maddie off the supplemental O2 and had traveled to Pittsburgh and Cleveland to have some very highly recommended Orthopedic specialists and surgeons look at Maddie. She was a candidate for a surgery that Doctors thought would be instrumental in straightening her scoliosis and in turn correct the non functioning diaphragm which would get her off the supplemental O2. If all went well with that we could than proceed down the road with necessary surgeries to fix her feet and hips. Only one obstacle prevented us from the surgery and that was Maddie's weight. She didn't have enough beef on her so we needed to plug away on her feeds however we couldn't just turn on a switch for feeds. So we plugged away.

As 2009 approached we began working more intensively with a local lung Doctor as to helping Maddie gain weight. One of her main reasons for not gaining weight in addition to the amount she could tolerate eating was shallow breathing due to her diaphragm. Breathing shallow meant more breaths which equated into burnt calories. So after consulting with him on numerous occasions we decided that we would try a method of assisted breathing at night to conserve the calories. It would require an up to 2 month hospital stay but it would be worth the results if she gained weight and we could get her to Pittsburgh for the much needed surgery. Our only request was that we wait until the spring of this year as we did not want to subject her to cold and flu season in a hospital. We were very optimistic for Maddie's future.

As the last week of January rolled around this year a very bad flu was going around and having 3 boys in school and daycare it was impossible to keep it out of the house. By the beginning of February the inevitable happened and Maddie had caught it herself. Things quickly spiraled out of control and on the morning of February 7th 2009 we found ourselves calling 911 as Maddie began to have some serious trouble breathing. She was rushed to Children's Hospital. When she arrived in the ER she was in Respiratory and Cardiac arrest. Maddie's anatomy due to the scoliosis and the contractures had made it difficult in past hospital stays to intubate her and this time was no different. It took an hour to intubate her this time and during that hour there were periods in which her brain went without oxygen. The results of her brain trauma are devastating and overwhelming. She spent another 66 days, this time in the pediatric intensive care unit with Doctors trying to ease the misfiring going on in her head. It took a majority of the 66 days to get her to a point where she wasn’t in what always looked like excruciating pain. Finally after achieving comfort for her she was released home under our care with the assistance of essential care, the pediatric division of hospice.

Maddie never had the ability to talk or walk but she had discovered her own way to communicate and maneuver. Her favorite way to communicate was with her eyes and with her smile and she always had a smile. Her brain trauma is so global and so significant that she has lost all those abilities. The only ability she has is to open her eyes but she cannot see. She has regressed in her feeds and can only tolerate 1/3 of what she used to before throwing up and has lost the ability to protect her own airway. She requires a watchful eye and constant care 24 hours a day.

Needless to say our optimistic appraisal of Maddie's future was shattered on that morning of February 7th. Still, we fight on because we love her and more importantly because she has fought so bravely through so much. She has been behind the eight ball since day one and she has smiled through it all. We are so proud of her and honored to call her our daughter. She has been loved by so many people of whom we know and don't know. She is an angel and her message is God's unconditional love. She has truly been and will forever be a blessing and inspiration to our family and hopefully many more.