Emma Kissock – Emma’s Syndrome

Emma Lynn Kissock was born 4-1/2 weeks premature on April 7, 2007. As Emma grew, she seemed to be a healthy baby, but a little delayed in development. In September, Emma came down with what seemed to be a cold…fever, sneezing, and occasional coughing. The doctors determined that Emma’s immune system was depressed and recommended that Emma not be in a daycare setting and not be out in public places…her mom cut back from full-time employment to 1 day a week. Emma was taken back to the doctor because she wasn’t eating, was fussy and had a fever. She was sent to Minneapolis Children’s Medical Center to be checked out. There they started nebulizer treatments and diagnosed her with torticollis(she favors looking one way due to tight muscles in her neck). A little later in the month she was taken to the emergency room…she had pneumonia. She was also found to have apnea…so the whole family had to learn infant CPR. In addition, Emma was found to have fluid in her ears, and an umbilical hernia. Her September hospitalization was 12 days.

In October, young Emma was hospitalized for 7 days. This time she had a urinary tract infection and she began to aspirate her formula.

November was another urinary tract infection and 13 more days in the hospital. Doctors also found that her left hip socket was dislocated. Emma also has reflux and the doctors are trying to figure out why.

Emma was hospitalized for 18 days in December. The doctors did bladder repair surgery, a skin biopsy for genetic testing and inserted tubes in her ears, all at the same time. During this stay in the hospital, Emma had 8 episodes of not breathing that required resuscitation. During this hospitalization she had renal failure and more infections. Emma and her family spent her first Christmas in the hospital.

January is when the geneticist told John and Robin that she is not sure of what type of syndrome Emma has, because whatever it is, it is very rare. The geneticist has sent pictures of Emma to her colleagues around the country to get more input as to what they are dealing with. Mid-January finds Emma back in the hospital with another fever and another infection.  This time Emma was in the hospital for 5 days.

Emma started February with surgery to repair her dislocated hip. At discharge, Emma was in a spica cast (from her ankles to her chest) and had a special chair and car seat to accommodate the cast. Emma went home for 3 days and was hospitalized again… this time with RSV (a respiratory infection), and she required oxygen. When the RSV was resolved, Emma was found to have C. Dif. ( a bacterial infection that causes stomach problems and diarrhea.). She continues to aspirate formula and has an NJ tube for feeding. Emma continues her “trick” of pulling out her feeding tube.  March arrived and Emma was still in the hospital.  She continued to aspirate formula and the doctors decided to take away all bottle feedings. They removed her cast and put in a GJ (gastrojejunal feeding tube, near her belly button).  She was in the hospital 34 days in February and March.

Emma got a helmet to wear to help reshape her head. 

On April 16, 2008, Emma was hospitalized again.  During this hospital stay she had low heart rate and actually quit breathing and was on a ventilator for 5 days.  Emma was in the ICU for many days and then up to the floor to be watched to make sure she was going to be ok.  She was battling an infection as well.  While in the hospital this time she had surgery to have the nissan band put on her stomach.  This will eventually allow her to eat, but nothing can come back up out of the stomach.  She will have the gag reflex, but nothing can come up.  Emma was in the hospital for 36 days.  She went home on May 21st.

Emma is an amazing little girl. She has already faced in a year more than most of us will have to face in a lifetime. When she smiles and giggles, she can melt your heart. As I write this, Emma has already spent 125 days of her young life in the hospital.

Emma and her parents, John and Robin, and her big sister Michelle are members of St. John’s. On Sunday, April 6, 2008, there was a spaghetti dinner and silent auction to benefit the family, as they face increased expenses while coping with their daughter’s uncertain illness. Please keep Emma and her family in your prayers and please consider supporting the Kissock Family! 

To donate, click HERE and send donations through paypal to:  EmmaBenefit@stjohns-chaska.org ! 

Emma Kissock Benefit

c/o KleinBank- Chaska

301 Chestnut Street

Chaska, MN 55318