By Joy Roberts
At 28 weeks of pregnancy, my baby girl, Lily (nicknamed Lily Pad) had several strokes in the linings of her brain called Intraventricular Hemorrhages (IVH). Approximately five blood clots resulted because of the bleeding which resulted in loss of brain tissue and were blocked the flow of cerebral spinal fluid (CSF). She developed acquired hydrocephalus because of the blockages. Initially, my husband and I were told that, the prognosis was death or severe disabilities and we should consider abortion. Fortunately, we met a wonderful neurologist at Duke University Medical Center who offered Lily hope. He explained the amazing developmental power of the infant brain and that these strokes and hydrocephalus did not necessarily mean Lily would not recover. He could offer no promises as to her prognosis, but he did say that her suffering and death were not eminent.
After much prayer, my husband and I decided to go through with the pregnancy, confident that the Lord had other plans for our daughter. Subsequent MRIs and CT scans confirmed IVH, blood clots, and Hydrocephalus. To minimize head trauma, she was delivered by scheduled C-section at Duke University Hospital and rushed to the NICU.
The doctors did not expect much out of Lily and predicted poor Apgar scores, seizures, and poor sucking reflex. In fact, death was the most likely outcome given to us. However, Lily Pad proved to be a fighter. Her Apgar scores were normal, no seizures were evident, and she could eat just fine. My husband and I are convinced she is a miracle of the Lord!
At four months old, Lily received a VP shunt to alleviate the accumulation of CSF in her brain ventricles. At five months old she underwent another surgery to replace the first VP shunt because of infection. Her Hydrocephalus is currently under control, her brain has increased in size and development, and she is making developmental strides weekly.
Lily struggles daily with physical disabilities which require three therapists visit her each week. Her therapy sessions can be intense because she cries a lot from the pain and stress of the physical tasks she is put through. I do a lot of crying because she cries, but my husband and I refuse to give up! Lily does suffer from some weakness on the left side of her body, called hemiplegia, and overall muscle weakness. Cognitively, Lily behaves like a typical child, with typical intelligence. She began crawling at fourteen months old and we are confident that one day she will walk.
Lily is now 20 months old and she is doing so many wonderful things! She can say many new words such as “that’s daddy,” “all gone,” “good girl,” and “cup.” She truly is a miracle and her ability to finally communicate with us and tell us what she wants is refreshing. We continue to work with her on her language development and especially her fine and gross motor skills. Walking is still a challenge, but she is oh so close…
Instead of fighting us when we encourage her to walk, Lily is now taking off on her own! She grabs her dinosaur-shaped push walker and does laps around the kitchen and living room. She is able to pull herself to a standing position and maneuver independently. And some of the issues she was having before now seem to be resolving themselves. For example, Lily’s left foot, which is on her hemiplegic side, turned in quite a bit when we began walking exercises. The Physical Therapist (PT) was quite concerned and the Developmental Therapist recommended a brace for the left foot. The PT did not want to add a brace because she thinks that the brace limits the ankle’s ability to flex and extend. And since our goal is to get her walking, the PT said the brace may cause more problems by limiting her range of motion in that foot and ankle. [Note from CHASA – Not all physical therapists share this view of using braces. Parents sometimes receive conflicting opinions from medical professionals.]
As Lily continues to use the push walker, her left foot has slowly turned straight. It no longer turns in when she walks. I did bring this to the attention of the PT and they said that often times the foot will turn in on the hemiplegic side in an effort to compensate for the weakness. Now, as her left side becomes stronger, she will not over compensate by turning her foot inward. To continue to assist the straightening of the foot, I must stretch the leg and foot for her into a turned-out position. And, as always, left-side strengthening exercises are part of our daily regimen.
Another concern we have is Lily’s size. She is incredibly small for her age. At her 18 month check-up, she only weighed 20 pounds. Her weight is not even registering on the standard growth chart; it is below it, off of the growth curves. In fact, Lily lost weight since her 15 month appointment! As well, her height is only on the 10th percentile curve. Her head size is stable at the 20th percentile curve. These numbers were quite concerning for our pediatrician and he asked if she ate well. Lily Pad eats everything in sight! She loves to eat so this is not her problem. I did talk to other parents of children with stroke, hydrocephalus, and hemiplegia through the Children’s Hemiplegia and Stroke Association (CHASA) website and the CHASA/Hemi-Kids Facebook Group and several confirmed that their children were tiny as well.
Also, it takes Lily and other children with hemiplegia twice the effort to do typical motor functions as it would take a child with no muscular or sensory problems. Lily will burn twice the calories reaching for a toy, pulling to a standing position, cruising the furniture, walking while holding hands, and crawling on the floor. It will also take her twice as long to accomplish these tasks which in turn will burn more calories. It is no wonder she eats often and a lot. She burns the calories as quickly as she can consume them. Proper nutrition will help support not only her brain growth and recovery, but also her muscle strength and rehabilitation.
How wonderfully amazing is the brain of a child! When no pathway exists, the brain creates new ones, repairs damage, and changes to overcome obstacles. Sometimes I am reminded of how much work we still have to do.
One afternoon I was watching Lily play. She was playing with her baby swing, pulling up on it and trying to connect the buckles in the seat. She lifted her left foot and put it on the ground while the right knee reminded on the ground. Lily tried to push up with her left foot and knee to a standing position. Sweetest little Lily Pad tried so hard to push up with her left side and could not do it. She struggled with it for a few minutes before finally giving up and switched to her right foot. It very much hurt my heart to see her struggle and to see how weak that side is. We still have lots of work to do, but Lily is trying to use her hemiplegic side and that is a huge improvement!
Someday Lily WILL walk! And it will be because she has a determined spirit, a prayerful family, loving friends, and knowledgeable physicians looking out for her. My husband and I are so excited about her future!
Watch for upcoming articles about our amazing Lily Pad from CHASA guest blogger, Joy Roberts.
