Hayden Maxwell was born with Pulmonary Atresia, Atrial Septal Defect, Ileal Atresia, and Chronic Lung Disease. After being in NICU at Torrance Memorial, the doctors had her urgently transferred to CHLA at 48 hours old. Here she had surgery to removed the blocked ingesting at 4 days old <4 pounds. After her stomach was fixed the doctors spent 4 weeks trying to stabilize her in order to surgically open her pulmonary valve.
On March 22, 2014 four pound, five week old (still only 38 weeks gestation) Hayden was taken into open heart surgery. They put in a BT shunt and came out reassuring us about how amazing everything went. They brought her up to her room, and the worst happened...they couldn't stabilize her. After much scrambling and failed attempts at stabilizing they rushed her back into the emergency room where they re-opened her up. We were told this was a "salvageable" surgery and they were doing everything they could to save our baby girl. Luckily, they moved the shunt to a more central location and her body responded well, they brought her back up to recovery where it was up to Hayden now to fight. For some reason she wasn't pulling out of sedation, she had minimal brainwaves and zero pupil retraction. The doctors and nurses didn't seem hopeful but we knew she would pull through. After a day of being on zero pain and sedation meds she finally twitched. The bypass machine used during surgery (acted as lungs and heart) may have been to much pressure on her tiny brain. We were told it was probably involuntary and even if she did recover we wouldn't know how well her brain would function.....but, we knew. From there forward Hayden made strides every day to get better. She recovered for 3 weeks at CHLA then transferred back to Torrance Memorial for 3 weeks to feed and grow.
But Hayden's fight isn't over, she still needs a new pulmonary valve and possible tricuspid valve, which she will hopefully get around March 2016. Even after that, pulmonary valves need to be replaced throughout her life as she grows. Therefore it's imparitive to keep her healthy and plump her up.
Hayden has entire team to keep her on t rack: a cardiologist on a regular basis, cardiac catheter surgeon, cardiac surgeon and a pediatric pulmonologist to help her with her chronic lung disease. She also sees a speech, physical, and occupational therapist 3 times a week to help her physically develop and to keep an eye on her cognitive development (intubation and lack of brain waves after surgery was compromising, all seems to be on track so far). Because of her heart and lung issues, she has not been able to put on weight and develop her muscles as needed for her gross and motor skills to properly function.
Becuase of her heart she has not been able to put on weight to grow which means her lungs are not able to grow. We are now working with a pediatric dietician at CHLA to hopefully avoid a gastrostemy tube.
Many of you may, this has taken a toll on our family. With all of Hayden's ongoing appointments, mom was forced to quit working to become a stay at home mom/caretaker. She also has an identical twin, Rilynn, who is luckily completely healthy. But, the financial stress of one income and mounting medical bills has become unbearable. We are not the type of people to ask for help or let anyone know our struggles but We have battled with insurance and at this point, up to our eyes in medical bills. With all bills aside, we will continue to give her all the medical attention humanly possible.
With that being said, please help us fund our daughter's medical past, present, and future medical needs.
We have raised the campaign amount because we have now taken into account her $1000 a month medical expenses (doesn't include hospitalizations and surgeries). We would like to make sure we can cover her expenses for the next 5 years, as the early growing years are crucial to her future.
Nearly 1 in 100 babies (about 1 percent or 40,000 babies) is born with a heart defect in the United States each year. It takes more children's lives then cancer, yet it's highly unpublicized. Here is our attempt at doing our part to repay the eternal debt we have to the medical community and the families that have been there to save, support, and help us through to save our daughter's life.