Alasen was born on May 24, 2005 at the University of Michigan Hospital. Prior to her arrival, during my 18 week ultrasound, we were told that Alasen had a very serious Congenital Heart Defect- Pulmonary Atresia/Hypo Plastic Right Heart Syndrome. There are two options for children with this type of defect… a heart transplant or a series of open-heart surgeries that reconfigure the circulatory system to bypass the non-working side of the heart. After much research, we chose Dr. Bove to perform the surgeries.
Alasen’s first heart surgery, the Norwood, took place when she was 2 days old. After two weeks, we were able to bring her home on a feeding tube. She needed 30 doses of meds per day! Doses and feedings needed to be administered around the clock. And since Alasen would sleep through the night, we got used to setting our alarm clock for four hour intervals.
Alasen’s second heart surgery, the Hemi-Fontan, was completed when she was 6 months old. During this hospital stay, we were also informed that she had plagiocephaly and torticollis (severe flat spot on her head and a prominent neck tilt). After she stabilized from her heart surgery, she was fitted with an orthopedic helmet and began physical therapy for the neck. Six month proved successful for the plagiocephaly, but not the torticollis. It was then recommended that Alasen see an ophthalmologist to see if a “floating” eye could be part of the problem. After three eye surgeries, over two years, the eye was corrected which also produced the desired effect on her head tilt.
At 15 months, Alasen suffered a stroke. The stroke affected the right side of her body, including the ability to sit, stand, walk, hold items, and talk. After two weeks of around-the-clock therapy at U of M, we were discharged. I went to a part-time schedule at work, and took Alasen to physical, occupational, and speech therapy four days per week. Alasen was also put on Heprin injections (blood thinner), which I administered twice a day.
At 18 months, Alasen was suffering from multiple attacks of Croup. There were many scary moments where she was admitted to the hospital for oxygen and breathing treatments. One of the attacks took the form of pneumonia. So, in entered another machine into our home… a nebulizer for breathing treatments. After more investigating, it was determined that Alasen had a narrow airway and that she may need to have a traechostomy. This was devastating to us, since she was just beginning to speak a little bit since the stroke. However, once they began the surgery, doctors realized that her airway was compromised by cysts. Once removed, most of the breathing issues subsided.
Three days before Alasen’s 2nd birthday, she underwent the last of the three heart surgeries- the Fontan. Since then, life has become less eventful. Alasen still attends physical, occupational, and speech therapy, but only once a week. Heprin injections have been replaced by oral Coumadin, and I am able to take her blood draws at home vs. the lab. Thanks to the Lord, Alasen is able to walk, skip, and run. She does need to wear braces on both of her feet, but the pink butterfly decals make it easier! She is now left handed, but can use her right hand for support activities. Speech has been slow, but she has finally started to use a full vocabulary… even if it is a bit difficult to understand.
In April 2009, she was granted a Rainbow Play Structure from the Make-A-Wish Foundation, and on any given day you can see her dressed as Cinderella swinging with all her might. Despite all of the difficulties she is a happy little girl who loves playing with babies and her doll house. All of the challenges we have endured and will possibly need to endure in the future are well worth the life that she lives and the lives that she touches. To God be the Glory!
Julie Osborne- Mom