The baby saved by SEVEN transplants
by Georgina Dickinson, Daily Mirror

And as her doting mum Julissa Cerda feeds her the last morsel of her favourite banana pudding from her plate, she’s every inch the bouncing baby girl.

But just five months ago Delilah lay limp in a hospital cot with tubes coming out of her fragile body as she was given 24 hours to live.

Diagnosed with an incredibly rare digestive condition called megacystis microcolon intestinal hypoperistalsis syndrome, little Delilah could not eat or drink normally and was unable to pass waste through her body.

It was a life-threatening condition – but then doctors gave her mum another bombshell: only an operation to transplant SEVEN of her little girl’s organs would save her.

“My pregnancy seemed normal at first,” says Julissa, 24. “But then I started to feel very sick and was in incredible pain.

“The doctors told me Delilah was retaining urine in her bladder, which was passing back into her kidneys, and at that stage that was the only thing we knew.

"But once Delilah was born we were told the worst – that she had a rare condition that meant if she didn’t have seven of her organs transplanted, she would die.

“I was so terrified. I thought we might lose her.

“It just seemed such a lot to do to a baby who was already so fragile and weak. I really did not know if she was capable of surviving such a big operation.”

But as Julissa and dad Agapito,26, watched their little girl, who had been born six weeks premature, fight for her life, they knew they had no choice but to proceed eventually.

By the time she was 14 months and still weighing just 19lb, Delilah was so weak doctors prepared the family for the worst.

“They told us that if they didn’t do something fast, Delilah was going to die because she couldn’t eat,” Julissa remembers.

“But what they suggested was mind-boggling to us as it was such a huge operation. I just could not get my head around everything that they needed to replace in her tiny little body.”

With what is believed to be fewer than five other similar operations in the world on a child as young as Delilah, surgeons also knew they were taking an enormous risk.

They sat with her petrified parents and told them the list of organs Delilah needed. And as it got longer, the more distressed Julissa and Agapito both became.

In order to survive, their little girl needed her stomach, liver, pancreas, kidney, spleen, and both small and large intestines replaced.

Julissa says: “I’d never heard of anything like that before. And without doubt that was the very hardest thing I have ever had to deal with in my life.

“As the doctors went through the list of organs, one by one, our hearts just sank.

“How could our baby survive so many operations? Then they explained all seven transplants would take place during one long, risky operation, and we feared the worst would happen.

“Our beautiful daughter could be taken away from us if it went wrong, but without it, it was unlikely she would live much longer.

“We had to make a life-or-death decision. We didn’t know whether to go for it or not.

“But when they gave her just 24 hours to live, there was no time for thinking about it. We had to go for the operation.

“All we could do was take it day by day, have faith and pray.”

Aged 14-months-old, Delilah was transferred from the hospital in San Antonio, Texas, where she was born, to the Jackson Memorial Hospital in Florida, where the life-saving operation would eventually take place.

They had kept her alive with intravenous drip feeds and tubes to clear the waste while they evaluated her condition, before concluding that a multi-organ transplant was Delilah’s only hope of survival.

Dr Akin Tekin, assistant professor of the clinical liver transplantation programme at the hospital, says: “Delilah had a condition in which her smooth muscles didn’t contract normally. When she ate, the food would just not go south.”

Dr Jerrold Eichner, the lead author of a paper on organ transplants for children on behalf of the American Academy of Paediatrics, adds: “This was an incredibly rare operation.

“Any organ transplant on a child that age is unusual, but a seven-organ transplant would be extremely uncommon.”

Julissa says: “After an evaluation of Delilah’s condition, I spoke with the doctors and got them to explain the whole of the procedure to me.

“I became more confident. I trusted them with my daughter’s life, and they did not let us down.”

Amazingly, just three weeks after being transferred to the Florida hospital, a donor was found and Delilah was admitted for the procedure.

During the 14-hour long operation, Julissa and Agapito paced up and down the parents’ suite, reassuring one another as best they could with hugs and comforting words. “We didn’t sleep all night long,” says Julissa. “You can only imagine the stress and worry.

“Then we got a call saying she had survived the operation, and it appeared to have been a success.

“We had tears streaming down our faces. We just hugged each other and rejoiced that our little girl was still alive.”

But that was just the first hurdle overcome. Now, the family faces a tense and nervous 12 months as they wait to see if Delilah’s body accepts or rejects the seven organs.

Dr Tekin says: “God willing, if patients survive one year, they usually go on to do fine for a very long time.”

So far, so good, then. And as the happy parents watch their miracle little girl eating without tubes and drips, they couldn’t be happier.

“Now she can eat, she won’t stop,” laughs her mum.

“We’ll be putting her on a diet next.”

Dad Agapito, who is training to be an architect at Texas University, adds: “Ravioli in tomato sauce, banana pudding and pizza are her favourites, and she loves drinking water.

“It makes us the happiest parents in the world.

“To see her eating on her own is something that we never thought would be possible.

“Delilah is such a fighter, and you cannot imagine the joy we have when she eats what we give her.”

Now 19-months-old, Delilah weighs just over 26lb and is slowly getting better.

While she manages to eat by herself during the day, at night-time she is still fed through a tube that runs all the way from her nose to her stomach.

Delilah still has a way to go until she is at full strength, but she is already talking, calling for mummy and daddy, and lets the doctors know exactly how she feels about it when they dole out her shots.

Julissa says: “For the rest of our lives we will be conscious that her body could one day reject the donor organs.

“There are always going to be bumps in the road, and all you can do is take it day by day, trust in the doctors and do your best to take care of your child.”

Both parents say they owe their own and their daughter’s happiness to the family of the three-month-old donor who made it possible for Delilah to live.

They know nothing about that baby – not even the sex or how he or she came to die.

But what they are certain of is that thanks to that family’s brave decision, their darling Delilah is still with them today.

Julissa says: “Words cannot express the gratitude we feel for the people who gave Delilah their son or daughter’s organs.

“You are bound to have mixed feelings about it, because in order for us to gain the gift of life for our daughter, unfortunately someone else had to lose their treasured child.

“I keep that baby and its family in my prayers all the time, and would love to tell them face to face how grateful I am to them for the amazing gift they have given us.”

Julissa had been studying criminal justice at Texas University, but after the life-changing experience she and her partner have gone through with Delilah, she has decided to switch courses to become a paediatric nurse.

This month the family are hoping that they will finally be allowed to take their daughter home to Texas, where they pray that Delilah will continue to go from strength to strength.

“We are so excited that we might soon be able to take her back to where she belongs,” Julissa says.
“It would be a dream come true for the whole family.”