“Life is like a box of chocolates; you never know what you’re going to get,” is the famous line from Forrest Gump. Like Mama’s take on life, pregnancy is much the same way.
No matter how healthy, no woman is guaranteed a complication-free pregnancy. Hope Valvero knows this all too well. While Hope’s first 36 weeks of pregnancy were complication-free, she gave birth prematurely due to a heart condition called peripartum cardiomyopathy.
What is peripartum cardiomyopathy? It’s a weakness of the heart muscle which begins sometime during the final month of pregnancy and may last throughout the first five or so months after delivery as well – preventing proper blood flow to both mom and baby.
Science doesn’t yet know what causes peripartum cardiomyopathy, but research in 2013 associated the condition with left ventricular non-compaction. According to the Cardiomyopathy Association, LV non-compaction is a genetic condition of the heart muscle in which the left ventricle (the main pump of the heart muscle) is “spongy.”
Premature Birth and Cerebral Palsy
Hope and Jason’s new baby, Claire, was born with cerebral palsy, and was unable to eat through her mouth and so, when she went home at 42 days old, Hope and Jason had been carefully trained on how to feed her via feeding tube. Due to lack of muscle tone, Claire would also have difficulty learning to hold her head up, sit up, and walk. Considering these challenges, it took the Valvero family time to find the right daycare center that could meet Claire’s needs after Jason and Hope returned to work.
What is cerebral palsy? It’s a disorder of movement, muscle tone, or posture due to damage to the brain – cerebral palsy can be the result of complications that occur while babies are still in utero, or by damage during birth. Doctors will diagnose in infancy, or as the child develops, as symptoms come to light. As the child develops, doctors can make further prognosis as to the child’s expected abilities in later life – cerebral palsy is not a progressive disease, meaning that it doesn’t get worse – which helps doctors make predictions and assign appropriate therapies based on ongoing progress.
Hope, Jason, and Claire: Three years later
Now, Claire is a busy, happy three year old. She is still enrolled at a pediatric therapy and developmental learning center called University Services East in St. Peters. There, she receives physical therapy, occupational therapy, and speech therapy. Claire is now able to walk by herself, or with minimal assistance – a significant milestone.
Despite these improvements, Hope admits to their family experiencing challenges along the way. Managing Claire is both physically and mentally taxing. As Claire grows, carrying her has become more difficult. Sometimes just accomplishing a task such as taking baths and getting dressed can leave the small family exhausted.
Perseverance Through Faith and Joy: Support All Around
In spite of the difficulties that the Valveros have overcome along the way, they persevere. Hope says,“Claire is so happy, you would never know she has a disability.”
Hope also acknowledged that the family’s faith in God and their church family has been a tremendous support system along the way. Loved ones were quick to offer a helping hand. “So many times people ask you what they can do, and really if they can just do it and not ask, that is a true friend. “
Yet another example of support was Hope’s primary care physician who spent many hours at the hospital, often on her own time, helping Jason and Hope decipher the information that the specialists shared with them.
Message to Other Parents: Advocate and Never Give Up
While life is harder than they anticipated, Hope and Jason have tackled Claire’s health issues with fervor. For families with children who also have cerebral palsy or other medical problems, Hope encourages them to advocate for their child. “Don’t be afraid to question their diagnosis.” She continued by explaining that physicians are there to guide, but that, as parents, you have to be willing to say no when something doesn’t work for your child or family.
Hope also acknowledges that it’s okay to be angry, but it’s important to be aware of where to direct the anger.
In those strange moments when anger rises – like when they’re trying to rush out the door in the morning and the handicap door isn’t working – Hope encourages families to be sure you have a support system, in particular someone who can understand what you’re going through.
For friends and family members who aren’t sure how to offer support, Hope suggests things as simple as taking the time to listen. She advises against telling a family how special they are; a family dealing with challenges is well aware of that already. Instead, ask questions when you’re curious or don’t understand something and, perhaps most importantly, don’t forget about your friends. While many families will outgrow issues such as not sleeping through the night and difficulties with eating and potty training, others may not. Showing sensitivity to these families without being patronizing is key.
Life With Cerebral Palsy, Faith, and Love
Despite the difficulties the Valveros have experienced, Hope is quick to say that she’s not bitter with their life. “It is hard, but I have a wonderful testimony.”