Willow Ansley Jaynes
On January 8, 2009 I found out I was pregnant. I was very excited and nervous at the same time. This would be my first child. I was always told I may not be able to have children, and that if I did I would be high risk. I made an appointment with my doctor. After confirming that I was pregnant, doing blood work and several checkups everything appeared to be progressing normally. My husband and I were doing the normal expecting parents things. I had several baby showers, painted and decorated the room, and picked out a name.
When I went for my 36 week checkup the doctor sent me for an ultrasound because my blood pressure was extremely high. She came back into the room very concerned because something was not quite right with the baby’s liver. I was then sent to the local hospital to see a specialist. He confirmed that something just wasn’t quite right and determined that I should not give birth in Jackson, but rather deliver in Memphis where I was close to LeBonhuer. I was scheduled to see a specialist in Memphis on Monday August 10, 2009 the day before my birthday, and 3 weeks before my due date.
We arrived at the specialist office and he took several ultrasound pictures himself. After viewing the results he came into the room and informed me that Willow would be born that day. After the C-section the first glimpse I got of my daughter she was in an incubator being rushed to the NICU. She was Polk a dotted all over her body and her abdomen was extremely large. We spent 9 days in the NICU there and my husband, family, and friends were all very worried about Willow. She seemed to be doing well but the doctors could not figure out the exact cause of the dots or why her abdomen was enlarged. Day after day her spots began to fade and the doctors were running test after test and could not figure out what was wrong with her.
On our 9th day there her team of doctors approached me and informed me that we were being transferred to St. Jude because they thought she may have leukemia. My world came crashing down. Surely this beautiful gift from God could not have such a horrible disease. We were transferred to St. Jude, our first day their Willow who was 10 days old was taken for a bone marrow biopsy. This included Willow being put to sleep and the doctors drilling into her little hips to extract marrow to test for Leukemia. The test came back negative and we were so positive that this was something she was going to outgrow. However her liver and spleen were enlarged and her blood test continued to show low hemoglobin and low platelets. She was hospitalized twice more for bone marrow biopsy’s and once for a skin biopsy. The 3rd time she was tested I received a call not long after on February 6, 2010. Her doctor informed me they had figured out what was wrong with her and that it wasn’t Leukemia but a disease called Gaucher’s. I was so thankful it wasn’t cancer until I came home and googled Gaucher’s. I learned that Gaucher’s was a horrible mean disease that hardly any infants or babies survived.
We were transferred to a specialist who tried to help us understand the disease a little better and tried to determine the best course of treatment for Willow. She had not ever seen an infant that had presented with symptoms before birth and had to consult some colleges before deciding her treatment course. After our first visit with the genetics specialist Willow became very ill and we were admitted to LeBonhuer. We wound up spending a month their and during that time many other horrible problems caused by Gaucher’s were uncovered.
We came home with a central line and Willow not being able to eat anything by mouth. She was hooked to an IV for 17 hours a day. We began enzyme replacement therapy while at the hospital and she continued to receive it once a week. She spent the last 4 months of her life at home with her loving family. On her 1st birthday we woke to find she had passed in her sleep. We were devastated; our worst fears had come true. Each day is a struggle but I know our beautiful daughter is without sickness in the arms of our Lord. She has taught us so many things that without her we never would have understood. She has made my husband and I better people. I am grateful for our time together here on earth and hope I will be reunited with her one day.
Amber and Jason Jaynes