Parents Told Baby Will Undergo Three Operations After Birth

During what should have been a normal ultrasound halfway through her pregnancy, mum-to-be Heidi Schmidt was told there was something not quite right with the results and she was referred to Paediatric Cardiologists at the University Hospital for further tests.

Kevin and Heidi Schmidt were stunned when doctors told them their baby’s heart was not developing as it should be and to enable the baby to survive, and live a normal life, several surgeries would have to be performed on the baby once born, with the first operation taking place soon after the birth.

With assurance given to the couple by the Paediatric Cardiologists that many children went on to live normal lives after being treated with the same condition they hung on to that hope all would be fine with their baby.

"When you hear something like that, everything stops," Heidi said.

First Operation Hours After Being Born

On 8 August 2007 Ellie Jo Schmidt made her way into the world at 3:34 pm.  Mum and dad were given two minutes to hold their new born daughter before she was taken away for further testing. 

A few hours later it was found that Ellie would need to undergo a cardiac catheter technique which involved cutting a hole between two chambers to enable a better blood flow.

New mum and dad had to navigate through machinery and navigation tubes to just touch her tiny fingers and it was not until she was three days old they were able to hold her.

As doctors had anticipated Ellie would need to go through what is known as the ‘Norwood Procedure’ which is a series of three open heart surgeries.

The second operation took place just five days later and after a lot of ups and down, tears and prayers they were finally able to take their baby daughter home when she was one month old

Baby Goes Home with Tubes

Ellie’s parents were shown how to cope with the nasal gastric feeding tube, an oximeter and instructions for the eight different medications she needed.

Twice a week a home nurse would visit and apart from taking Ellie back and forward on many trips to the specialty clinic for checkups they were advised not to take their daughter out in public or allow anybody with the slightest sign of illness near her.

After coping well with their new way of live all seemed to be fine and they were patiently waiting for the third surgery to take place when Ellie reached six months of age.

Pre-Op Procedure Brought Forward

Unfortunately when she was just three months old she suffered complications and it was decided to go ahead with the pre-op procedure of fitting her with a cardiac catheter.  This involved a balloon being placed up a narrowing in her aorta which would give her more comfort and ease of breath.

After a stressful and nervous time they met with the surgical team and it was decided they would bring the operation forward and on January 8 2008 Ellie at just aged five months was taken in for the Glenn Procedure.

The operation took six hours and twenty days later baby Ellie was well enough to go home.

One Year Later

While still on eight medications a day Ellie at one year old is thriving and Heidi and Kevin want to give hope to others by sharing their story and experiences.

Heidi says “She’s the best baby, I’m not kidding.  She's still learning how to crawl, but rolls to where she needs to go.

"She sits on her bottom and just spins in a circle," Heidi said with a laugh.

When Ellis reaches 35lbs she will undergo her last surgery and will finally enable her heart to pump with a single ventricle.

“Our family has a few years to be together and time to enjoy each and every day until her next surgery.  We are very blessed to have Ellie in our lives; she is a true miracle.  We owe an immeasurable amount of thanks to the staff that took care of Ellie, they have given our daughter a chance at life and for that we are truly grateful” are the words spoken by Ellie’s mother. Heidi.

The Linn County Heart Walk

Each year walkers raise money during the Linn County Heart Walk for the American Heart Association, which has committed over $23 million over the five years.

This year the Schmidt family will be participating in the walk with Ellie being the events honoured survivor.

"She'll be at the walk, riding in her stroller with her feet propped up, because that's how she rides," Heidi said.

They want to help medical advances by doing what they can to ensure other babies survive what their daughter went through.

"It's so important to us that we do what we can to help others," Heidi said. "We are very blessed to have Ellie in our lives; she is a true miracle."

Congenital Heart Defects

Babies born with congenital heart defects over twenty years ago and going on to become active toddlers were slim.

This condition affects up to 36,000 babies each year and from this figure, 9.200 have to undergo invasive treatment in their year.

Congenital cardiovascular defects are present in about 1 percent of live births. They're the most common congenital malformations in newborns.