Hailie Nicole Smith
March 9, 2000 – June 24, 2016
Hailie was born on March 9th 2000, about twelve weeks premature. She suffered a grade 3 brain hemorrhage shortly after birth and the doctors told us that if she survived she would probably never walk, talk, or be able to feed herself. Before she was two weeks old she had three brain surgeries, to complicate an already desperate situation because of the hemorrhages she acquired something called Hydrocephalus, a condition in which the brain fluid builds in the brain and cannot drain through the spinal cord. She received her first shunt when she was just eight days old.
Hailie’s first year was filled with a combination of shunt revisions, to replace failed shunts, eye surgeries, to repair damage done from the frequent surgeries and her initial brain hemorrhages. To complicate matters, as a result of all the trauma that her brain was subjected to, she developed seizures and her doctors had to search for the right combination of meds to control the seizures. Before her second birthday she had a dozen more surgeries to repair shunts that failed and even a cranial expansion to relieve pressure that had built up in the brain.
By the age two, however, Hailie proved everyone wrong including her Neonatologists, when she took her first steps. It wasn’t long before she was off and running. She still had balance issues and was required to wear leg braces and special shoes but it didn’t slow her down. She received occupational and physical therapy daily and attended early childhood classes at the age of three. Over the next three years she continued to prove the doctors wrong and if not for the occasional shunt revision or emergency brain surgery this period of her life would have seemed somewhat uneventful. Throughout it all she smiled and delighted everyone she met with her spunkiness and determination.
By the age of six after sixty plus brain surgeries, Hailie’s health began to improve, and for the next 2 ½ years although there was the occasional hospital visits/doctor appointments and MRIs she did not need any more surgeries. Then on October 4, 2008 everything changed, Hailie became deathly ill, her conditional deteriorated so quickly that she had to be flown to Madison for an emergency shunt revision. This began one of the most difficult times in little Hailie’s short life. The replacement shunts continued to fail and daily attempts to make it work was having no success. It was discovered that her little brain had so much scar tissue there was no way to develop any communication between the ventricles, her doctor decided to install a second shunt. This shunt also failed and for the next three months Hailie was confined to the ICU at the American Family Children’s hospital in Madison.
On December 10th her neurosurgeon met with the family and said, there is nothing more he could do. If there is someone we would like to see for another opinion now would be the time to do it. We were devastated, Hailie had endured so much and we weren’t ready to give up the fight, and neither was she. On December 20, 2008 our doctor decided he would try and remove the original scar tissue from the brain hemorrhage she had at birth. As part of the procedure he had to remove a small part of her cerebellum. Although the surgery was successful it led to more problems for Hailie. She lost the use of her limbs and had to be re-taught how to use her arms and legs and was completely dependent on her family to do everything for her. But once again that did not stop her from doing what was necessary to get back on her feet. Surprisingly her cognitive abilities were not effective and with the help of lots of tape around a tiny stylus pen Hailie played her Nintendo DS, nonstop 15 to 20 hours a day.. We would slowly remove the tape making the pen smaller and smaller. This helped her brain form new paths and allowed hand eye coordination to be restored. In no time at all she was writing again.
On January 16th she was released from the hospital after 35 brain surgeries, three new shunts, and 40 lbs lighter. Hailie faced a long recovery and months of therapy, but she remained determined and never lost that smile and laughter that could break anyone’s heart!
She returned to school in February in a wheel chair and was determined to walk by the time summer came around. Her family has a camp site at a local camp group and it proved to be the right medicine for the whole family. By April she was walking on her own and although she still had a long way to go there was no doubt that she would be ready to go by the time summer came around.
For the next two and a half years Hailie seemed to be settling in to life as a normal child, all be it one with three shunts in her brain. In June of 2011 she graduated from elementary school and things were looking up for her. Summer came and went and soon she was back at school. In fall she began to have problems with one of her shunts and by November it had become critical again. It became apparent to everyone that things were getting worse quickly. Several surgeries produced little or no relief and by Christmas things had gone from bad to worse. Hailie was in and out of the hospital for most of December. Finally, around the first of January her doctor said that the third shunt was no longer able to compensate for the ongoing problems in the fourth ventricle.
He suggested that a fourth shunt was needed, however because that would require sensitive work around the brain stem he did not want to attempt it unless there were no other options. He suggested that they hold off for a while and see if the new revisions to the third shunt might still work. He left to go back to his homeland for ten days to see his family, by the time he got back she was in trouble. Her third shunt was not able to keep up and she was in danger of stroking out because of the pressure on her brain. He decided to go forward with the surgery, but limit his approach to non invasive surgery if at all possible.
The eight-hour surgery seemed to work but during recovery it was learned that Hailie had suffered a minor stroke and once again some of her motor functions were affected. Not letting anything faze her Hailie was ready for whatever it was going to take to get back on her feet again. Unfortunately, her rehab was going to have to wait. In early March she began to have problems again. She went back to the hospital for some more tests and everyone’s worst fears became a reality. The surgery had not fixed the problem and things were deteriorating quickly. The family was called in to the hospital and the doctor told everyone that he needed to go back in and try to reroute the fourth shunt and that it was as delicate an operation as he had ever performed.
Hailie’s mom said that this was the longest six hours of her life. Hailie survived the surgery but it once again left her with extreme trauma to the brain and little things became big deals for her. At first she had little or no feeling in her arms and legs, she could not swallow, and she could not even open her eyes.
After almost a month in the ICU, Hailie was ready to go home. She still needs a wheel chair to get around but with a little help she can walk on her own. Her eyes don’t open all the way, but you can’t help but see them sparkle as she squints to see who you are. Through all this she continues to smile and laugh just as other twelve year olds do, only to her every day is special, the other day she was having a really good day and she asked her mom if it was okay to stay up later, her mom asked her if she wasn’t tired, her response was mom I feel so good today I don’t want the day to end. I don’t want to go to sleep and wake up sick again!
Today Hailie at the age of just 16 lies in a bed in a hospice in Madison with no hope for recovery. Her family deals with the reality that this will be her last battle. The miracle surgeries that kept her alive are now killing her. Soon there will be no more pain, no more fear of another surgery, for Hailie just peace. Her loss will be felt by many, but because of Hailie and the surgeries she endured, thousands of children will have hope for a better life. The Doctors at the American Family Children’s hospital in Madison have learned a lot Hailie and her friend with Hydrocephalus and the improvements in treatments will mean better lives for a lot of Children.
“God saw you getting tired, and a cure was not to be. So He put His arms around you and whispered ‘come to me’. With tearful eyes we watched you, and saw you pass away. Although we loved you dearly, we could not make you stay. A golden heart stopped beating, hard working hands at rest. God broke out hearts to prove to us, He only takes the best.”
Rest Peacefully, Hailie- we will miss you