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. A little later in the month Emma was taken back to the doctor because she wasn’t eating, was fussy and had a fever. It was later that day we were told to take her to Children’s Hospital of MN – Minneapolis’ emergency room to be checked out…she had pneumonia There they started nebulizer treatments and diagnosed her with torticollis (she favors looking one way due to tight muscles in her neck).. 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 had her umbilical hernia repaired. It wasn’t more than one visit to the hospital at that time and we started having answers. So, that is the reason Emma continues to go to Children’s — they have many specialists that are called in when needed to assess a child’s problems. It was also at this time that Robin cut back to part time work so that she could take care of Emma, because 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 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 of 2008 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 a nissen fundoplication, where it’s like a knot tied at the top of her stomach. This will eventually allow her to eat, but nothing can come back up out of the stomach, as long as it stays tight. She will have the gag reflex. Emma was in the hospital for 36 days. She went home on May 21st.

In June, 2008, while on a trip to Pennsylvania, Emma’s stomach stopped working. So she was flown from the local hospital to the Children’s Hospital in Danville. That meant an unplanned stayed of a few days in the hospital. She was back in and out of the hospital a couple of times in July.

In August, 2008, Emma rolled over for the first time. In mid September Emma was hospitalized again with more respiratory problems. In October, Emma got a stander to try to help her develop the leg muscle so that she can learn to stand. They don’t know if Emma will ever walk. In November, 2008 Emma got her first tooth (not a front one, but one to the side). At the end of November, Emma was hospitalized with double ear infections. She was hospitalized again in December and spent her second Christmas in the hospital and got a J tube for feeding. She was able to go home in January, but was back in the hospital during the middle of the month with more feeding issues. At this point, Emma has the development of a 6 month old.

In February, 2009, Emma got braces for her feet to use while she is in the stander. At the end of the month she was back in the hospital for respiratory, feeding issues and c.diff. Emma went home in early March. April brought Emma’s 2^nd birthday and the development of a few new sounds from Emma. In July, Emma was again in and out of the hospital a couple of times with infections and feeding issues. In mid September Emma was back in the hospital running high temps and had cold/flue like symptoms and wasn’t released until early October. In October, Emma got a few hours a week of nurses coming to the house to help out. She was also readmitted to the hospital for feeding problems. While in the hospital, they put in a central IV line. She was out by the end of October and finally got all her teeth.

In November, 2009, we finally get a diagnosis of Emma’s condition. She has Cornelia de Lange Syndrome. Some of the characteristics are low birth weight, delayed growth, developmental delays, limb differences, small head size, long eyelashes, thick eyebrows, hearing impairments, vision abnormalities, gastroesophageal reflux, heart defects, feeding problems, neurological problems, late teeth and autistic traits. According to information I have found it affects 1 in 10,000 newborns and can range from mild to severe. Emma is not on the severe end as she does not have any deformed limbs.

Emma was home for Christmas of 2009. In January, 2010, they accessed Emma’s port and started IV fluids to keep her hydrated at home instead of going back to the hospital.

Emma was in the hospital again from the middle of February to the 1^st of March with the RSV virus.

In April, 2010, Emma turned three and finally stood next to the couch alone for a couple of minutes and sat alone for the first time. May brought another surgery to replace the tubes in her ears and a short hospital stay.

At the end of July, Emma was battling high temps again and was admitted to the hospital. They have now diagnosed HLH (hemophagocytic lymphohistiocytosis) which is a rare blood disease. With her blood level down, they gave Emma blood transfusions. The middle of August Emma was again in the hospital with high temps and more blood transfusions and then came the word that they were going to start chemo to help the HLH. By the end of August she had 2 rounds of chemo and was at home. September brought us back to the hospital a couple more times and more chemo treatments. Emma also lost her curly hair.

In October, they replaced Emma’s central line with out-patient surgery. Emma also had casts put on her ankles to help keep her ankles straight and to help the muscles hold the correct position. By mid October, Emma was back in the hospital again and was battling high blood pressure, low heart rate. She was put in ICU for a few days as well. She was able to go home at the end of October.

November brings us to a waiting game to see what the new meds are going to do. They have decided not to continue the chemo at this time.

Emma is an amazing little girl. She has already faced more in her three years of life than most of us will have to face in a lifetime. When she smiles and giggles, she can melt your heart.

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: cleverson@faegre.com!