When you wish upon a star...One lucky girl gets the wish of a lifetime granted

  • Published
  • By Monte Miller
  • 375th Airlift Wing Public Affairs
Pink letters on a purple t-shirt read "I stayed at St. Louis Children's Hospital and all I got was a silly new liver".

The t-shirt is the favorite wardrobe item of 9-year-old Rachael Sansoucie, who just received a new liver after waiting a lifetime.

Rachael is the stepdaughter of Darren Parks, 561st Network Operating Systems Detachment 3 system administrator at Scott.

She was born with liver disease and has lived her entire nine years with Caroli's disease.

"Basically, her liver was not connected to anything when she was born," Mr. Parks explained. "She had two surgeries when she was first born and then another six months later. At that time they did a Kasit procedure to take a piece of her intestine and connect it to her liver. When she was first looked at, her mother was told she wouldn't need a transplant for several years."

Rachael's mother, Melissa, was told her daughter would always have growth and mental problems, but that has not been the case.

"She's always been a sick child and she knows that," Mr. Parks said. "She's a regular nine-year-old, but she knows there are certain activities she can't do like the other kids because the smallest things could cause her liver to fail. Even if she got a cold, it could go right to her liver and damage it. The Caroli's disease caused her liver to deteriorate more and more."

Also, because of her compromised immune system and not handling illnesses well, her mother has schooled Rachael at home.

A few months ago, Rachael's health took a turn for the worse and the reality they had in the back of their minds was coming to the forefront.

Because Rachael was in fairly good health, she was not placed very high on the transplant waiting list and the Parks' were told it would be at least three to six months before she got a liver, unless the hospital was able to pull some strings.

"She was rated like a minus 10 and you have to have a score of 20 to be on the list," Mr. Parks explained. "Then the hospital did some pulling. That was August 12."

That evening, the family was outside watching a meteor shower. As the cliché goes, Rachael made a wish on one of the 'falling stars' that she would get her new liver very soon. Little did they know what the next few hours had in store for them.

About two hours later at 11 p.m., the family was going to bed for the night when they got the most important phone call of their lives.

"It was hospital calling to tell us they had a liver and could we come right in to the hospital," Mr. Parks said. "Needless to say, we went straight in."

They loaded up and drove from their home in Belleville to St. Louis where Rachael began to be prepared for a 16-hour transplant surgery.

"Twenty-four hours after we got the call from the hospital, Rachael had her new liver," Mr. Parks said. "She went into surgery between 9 and 10 a.m. and the surgery ended about 4:30 a.m. the next day."

The surgery was successfully completed Aug. 14 and amazingly, just seven days later on Aug. 21, Rachael and her new liver came home. Most liver transplant recoveries come with up to a six-month hospital stay.

The very next day, complications arose involving fluid build-up and valve leakage. Once again, the Parks family made a trip to the hospital, only this time with a less than optimistic outlook.

"They had to open her up again and do exploratory surgery," Mr. Parks said. "They found the problem, fixed it and she was in the hospital another week."

On Aug. 28, Rachael came home and that is where she has remained and is recuperating very well.

"She has a special broviac tube that runs near her heart and comes out near her shoulder. It was implanted for her medications and for blood drawing purposes," Mr. Parks said. "That way they don't have to stick her with a needle every time we go in. She also has a drain in her side to expel excess bile from around her liver. That should be in for another week or two."

Although they don't know many details, Rachael's new liver came from a teenage boy.

"All we know it he was from out of state and was killed in a non-traumatic way," Mr. Parks said. "Apparently, his parents donated many of his organs. Rachael wants to find out his name."

Before her surgery, Rachael was selected by the Make-A-Wish foundation to get a wish granted. Her wish was to have a playhouse built in the Parks' yard and it is currently under construction."

"When she finds out her liver donor's name she wants to have something placed in the flower garden of her playhouse," Mr. Parks said. "Every time she plays in it, she wants to remember that boy."

Mr. Parks added Rachael and their family are writing a letter to the donor family that will be passed on by the hospital thanking them for their life-saving gift.

"There is no direct contact between us and the boy's family," Mr. Parks said. "Once the hospital sends them our letter, it will be up to them if they want to reply."

About two months have passed since Rachael's surgery and her recovery is progressing, but she will not be fully healed for quite some time.

"They told us the full recovery process takes a year," Mr. Parks said. "She's getting better everyday. Luckily, she was still in pretty good health when she had her surgery and that has made her recovery time better.

He added since Rachael was able to get a liver so quickly, it not only helped her physically, but also helped the family mentally.

"It was six months less worrying that we had to do," he said. "We are extremely happy it happened so quickly and she is doing so well. She still needs a lot of attention and it can wear on you. We used to only see our angel a little bit, now we see it a lot. We couldn't be happier."

As Rachael and her family progress, they are cautiously optimistic about the future, but know there is still a long road ahead and there may still be speedbumps.

"The doctors say all of her levels are normal and she's getting better everyday," Mr. Parks said. "Children tend to adapt to a transplant better than adults. She will have a rejection, everyone does. The question is, when and how bad it will be."

Rachael's cheery outlook about her illness and transplant has also played a role in her recovery to this point.

"She's very positive about it," Mr. Parks said. "Once she makes up her mind about something and has a game plan, she's full speed ahead. She was really looking forward to her transplant."

In the coming weeks, Rachael will still go in for check-ups weekly and her tubes will be removed. She will though, be required to take anti-rejection medications for the rest of her life.

"Once the drainage tube is taken out, I think she'll be able to be more active," Mr. Parks said. "She still has to wear a surgical mask when she goes outside because her immune system in suppressed and she has to take a fistful of eight pills a day."

Rachael's medical bills were astronomical, and were covered by a combination of insurances, but the need for medications for the rest of her life will carry a hefty price tag as well.

"When all is said and done, the transplant will have cost $500,000," Mr. Parks explained. "It was $200,000 just to get the liver. Her anti-rejection medication will be $20,000 a year for life."

To help defer some of those lifelong costs, the Parks have joined forces with the Children's Organ Transplant Association to help with fundraising for her medical bills and needs.

The Parks are in need of volunteers to administer the fundraising because family members are not allowed to do much of it.

The Parks have two other children, Jackie, 14 and according to Mr. Parks, Rachael's best buddy 2-year-old Samara, that have played a major supportive role in the recovery of Rachael and the progress she has made.

For more information on Rachael's progress and the Children's Organ Transplant Organization visit www.cota.org, or e-mail her parents Melissa and Darren at darren.parks@att.net or at Melissa.parks@att.net.