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JASLYN'S STORY

As I sit here and type this Jaslyn is playing like a normal child of her age. But she is not, she is a very special little girl. Jaslyn was born on August 8th, 2006 at Advocate Christ Medical Center in Oak Lawn, Ill with a severe left sided Congenital Diaphragmatic Hernia. (CDH). When she was born her stomach, liver, small and large intestines as well as her spleen were in her chest cavity severely compromising her lung growth. Her liver had adhered itself to the inside of her chestwall also. We found out about her condition only weeks before her birth and not given much hope. After birthing she was ventilated and stablized. The first time I saw my beautiful daughter she was surrounded by and attached to many wires and machines, Although she did well the first few days we were still given a very grim prognosis. Her first neonatologist went as far as to tell us that she needed at minimum 1.6 lungs to survive and that IF she did survive she would have severe global delays and likely never roll over, talk or even breath without assistance. Nonetheless we refused to give up and she had her repair surgery on day 4 of life. She was doing great considering.
Then on day 6 of life Jaslyn took a severe turn for the worst. We came back from meeting another CDH baby, Hailey, who was going home that day to find Jaslyn surrounded by dr's and nurses. Jaslyn's O2 sats were barely in the low 70's and dropping. Our daughter was dying right before our eyes. We were given only 2 options. Either hold our daughter and let her pass peacefully in our arms. Or attempt ECMO. ECMO is a heart/lung bypass machine used for infants. It is a last resort and often times can give the heart and lungs enough of a break to be able to sustain life. We chose ECMO and although there are many risks associated with ECMO we knew in our hearts we had to try it. That night Jaslyn was successfully cannulated and the ECMO machine took up 3 1/2 bed spaces. Jaslyn was by far the sickest baby in the NICU. After 6 days Jaslyn was able to come off ECMO. She continued to do well once off. By day 17 she was able to be extubated. And on day 19 I was finally able to hold my precious baby girl for the first time ever. Daddy was still a bit nervous due to all the wires. On Sept 1st we received a call that the NICU was full and they were turning away sick babies. They wanted to send Jaslyn to a local hospital because she was now one of the healthiest babies they had. We agreed to give other babies the chance Jaslyn was given. So on Sept 1st we eagerly met Jaslyn at Porter Memorial Hospital 15 minutes from home. September 13th, 2006 after only 37 days we brought precious angel home to be with her family. She came home on oxygen, monitors and a ng tube for feedings. But after 2 short weeks of being home we got rid of all of that. Jaslyn still suffered from poor weight gain, reflux, compromised immune system and had some issues catching up to other kids her age. But she did so very quickly. For the most part Jaslyn is very "normal". However at 9 months old Jaslyn had her first seizure. 6 weeks to the day later she had her second seizure. Both were Gran Mal (Tonic Clonic) in nature. And 6 weeks to the day later she had 4 within 12 hours. That's when they started her on medication,Trileptol. With the medications her seizures became much worse and we spent numerous nights in the hospital. The 911 dispatcher, Paramedics and local fire department grew to know us very well. So did our local hospital and Riley Children's Hospital 3 hours from home in Indianapolis, Indiana. Finally I had enough and they took her off her Trileptol and switched her to Phenobarbitol. But she started having smaller seizures (Petite mal). We tried Keppra without helping also. Now she is on Phenobarbitol and Valporic Acid and we are actively seeking out proper care for her. In March I demanded they test Jaslyn for something called Dravet Syndrome. In May we got the call that she tested positive and definately has Dravet Syndrome.
You can learn more about Dravet Syndrome and it's affects at www.Idea-League.org Or simply follow the link to your right. You can also learn more about CDH at www.BreathofHopeinc.com or follow the link to your right. To read Jaslyn's full story please go to www.carepages.com and type her in carepage name (JaslynParker). There is a link to carepages on the right also. Please feel free to email me (Tiffany Parker) anytime at info@jaslynparker.com. Please bear with us as we will be adding more things soon.

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