When two parents have a pair of healthy, normal children, they expect the birth of their third to exactly the same.
When Leilah Noel Waltz was born Jan. 3 in Lake Forest Hospital to Deerfield parents Julie Fiocchi Waltz and Larry Waltz that is what they expected.
And establishing a Go Fund Me campaign to help with medical expenses was the furthest thing from their minds.
By the time Leilah was six hours old, she was taken by ambulance to Lurie Children’s Hospital in downtown Chicago and the rest of the Waltz family — Autumn, 4, and Parker 2 — has been living at the nearby Ronald McDonald House ever since.
Leilah was born with Down Syndrome and a variety of physical conditions which will require a number of surgeries to repair her heart and enable doctors to remove the colostomy bag which was installed when she was two days old so she can relieve herself in the normal manner. She is fed through a tube because she cannot breathe while eating due to her heart condition.
“Her heart is without the chambers which help cycle the blood,” said Julie Waltz, her mother. “The blood isn’t able to go where it’s supposed to.”
She calls the conditions arterial septal defect and ventricular septal defect. They will be corrected when Leilah is four months old.
While the Waltz family has medical insurance, they knew there would be expenses which would likely not be covered. They also had friends and family who wanted to help. One suggested they raise money through Go Fund Me. As of 5 p.m. Feb. 13, they raised more than $10,000 from 74 individuals in 25 days.
Friends and family flocked to the website to offer help. One of the donors, Lindsey Whitaker, a friend of Julie since they were teenagers, wanted the family to concentrate on taking care of their children and each other.
Whitaker felt financial concerns would detract from that.
“All you should have to worry about is getting better and when you worry about money you cannot,” Whitaker said. “Unfortunately you have to deal with other things like paying. I just want them to concentrate on healing.”
The Waltz family set a goal of raising $10,000 which they met. They hope it will take care of their deductible they also have a plan if they do not need it all.
“We can donate it to the National Downs Syndrome Society,” Julie Waltz said.
The news came as a shock to the Waltzs. Leilah was born with a planned Caesarean section so Julie did not see what was happening. When she was in the recovery room she started to get a sense things were different this time.
“When we asked when we could see our baby we were told the doctor would talk to us. We were getting nervous. They told me they had to put her on oxygen,” Julie Waltz said. “They wheeled her past me on a cart wearing an oxygen mask. I didn’t get to hold her. It’s like they took a part of me away.”
The Waltzs were numb. Nothing had started to sink in yet as they gathered up Autumn and Parker to head into the city. The older children have yet to see their baby sister because of a hospital policy to limit exposure to germs from young children.
“I was scared, shocked, confused, angry at the world,” Julie Waltz said.
“You’re not able to celebrate a birth,” Larry Waltz added. “You’re mourning with the sense of loss of an ideal.” Friends and family helped. “A lot of love and support and prayers are helping us get through this.”
Their Deerfield roots go deep. Though the Waltzs did not know each other growing up, they both went to Wilmot Elementary School, Caruso Middle School and Deerfield High School. She is 31 and he is 33.
“We knew each others’ siblings,” Julie said. “We met at Trax.”
One month and a lot of medical treatment later, the family is starting to come to grips with their new reality. They knew they had a child who would have different needs than the first two and they were charting an uncertain course.
“One of the things about children is every child is an individual,” Julie Waltz said. “We won’t know her difficulties until we get there. We kind of have a crystal ball but it’s fuzzy.”
The Waltz’s approach to Leilah’s condition is something that struck Julie’s longtime friend and business customer, Barbara Claeys of Lake Forest, and helped prompt her to donate to the Go Fund Me campaign.
“We were very touched by the way they have gone with such a positive attitude with Leilah,” Claeys said. “I am impressed by how positive they are and how much they have started coping. They are doing it with lots of love.”
The Waltzs’ reality now is caring for their children while learning to provide for a baby who will have a life different from her siblings. They are getting help from the hospital and the Ronald McDonald House.
“I never knew anyone with Downs Syndrome before,” Julie Waltz said. “Now I do. The hospital has really helped us meet wither families.”
Lurie Children’s Hospital has a ParentWISE program which connects parents just learning to cope with a child with severe illness or conditions with those who have walked in their shoes, according to ParentWISE Coordinator Gale Morgan-Williams.
“It’s a peer mentoring program,” Morgan-Williams said. “It gives them a change to meet others who have had the same experience. You can’t know what it’s like unless you’ve had a child who needs similar care.”
Autumn and Parker are getting used to life at the Ronald McDonald House. For them it is different. They do not yet have a sense of how serious their baby’s sister’s condition is.
“Autumn will say,’ you’re my friend, let’s play’ to another child she has met there,” Julie Waltz said.
There are unusual experiences for Julie and Larry too. They never know who may show up at Ronald McDonald House as a volunteer.
“It’s been amazing,” Larry Waltz said. “Rick Hahn from the Chicago White Sox served me a meal, it’s been an experience.”
Hahn is the team’s vice president and general manager.
As trying as this time has been for the Waltz family, they remain steadfast in their faith and thankful to friends and family for all the support they have received.
“Our faith has been strengthened through this challenging time thanks to all the love, support and prayers that we have received from so many people,” Julie Waltz said. “Everyone who has stepped up, in one way or another, is very special to us. We are beyond grateful.”
Steve Sadin is a freelance reporter for Pioneer Press.
Twitter: @sadinsteve
