With a full head of nearly jet-black hair that is slowly fading to a lighter shade of brown, long eyelashes and deep, dark-colored eyes that twinkle when they’re open, Grace Johnson looks like a typical three-month-old baby.

However, her tiny chest, covered in large bandages heaves up and down with all the might she can muster. Numerous tubes connected to her little body not only give her the nutrition she needs, but keeps all the machines around her beeping and buzzing.

Baby Grace is anything but typical. She is and will always be a heart baby.

The daughter of Gerard and Brittany Johnson of Garfield, Grace was born Nov. 16, 2019 at Alomere Health in Alexandria via an emergency C-section. Grace was the couple’s third child. They also have two boys, Gauge, 5, and Noah, 4.

While standing watch over their baby, who was peacefully sleeping in her crib at the University of Minnesota Children’s Masonic Hospital in Minneapolis last Sunday, Gerard and Brittany recalled their daughter’s terrifying three-month journey thus far.

Gerard, Brittany, Gauge and Noah Johnson supporting Baby Grace with their "Amazing Grace" T-shirts. (Contributed)
Gerard, Brittany, Gauge and Noah Johnson supporting Baby Grace with their "Amazing Grace" T-shirts. (Contributed)

What happened?

Brittany’s first two pregnancies were uneventful, and much of her pregnancy with Grace was the same – until the end. Brittany ended up getting sick, really sick, the week before Grace was born. A viral infection left her with a fever of 106 degrees. When Brittany woke up on that Saturday, Nov. 16, the baby wasn’t moving. She was 36 weeks along and everything up to that point had been going really well.

Gerard was in the deer stand when Brittany told him what was going on and that she was going to the emergency room to get checked out. He started making his way to the hospital.

“We weren’t really sure what the situation was,” said Gerard. “But I knew I needed to be there.”

In the emergency room that cold November day, Brittany learned that Grace was breech, meaning she was situated backwards in her mother’s womb, and that she was not doing well. An emergency C-section was ordered. Gerard made it to the hospital in time and was there when Grace was born.

Their daughter, who weighed in at 7 pounds, 8 ounces, was immediately taken from them because she had to be resuscitated. Her heart had stopped. She was treated with many types of antibiotics because the cause of her problems was unknown.

A spinal tap finally provided the doctors – and the Johnsons – with answers. Grace had enterovirus meningitis. By that time, Grace had been rushed by ambulance to the St. Cloud Hospital because her platelet count levels were slowly declining and she was deteriorating. She spent a few days there and it appeared that her health was finally on the mend.

Around 6 a.m. on Nov. 27, however, the Johnsons received a phone call neither was expecting. They were asked if they wanted to have Grace baptized immediately. Her health took a turn for the worse and she quit breathing. She needed to be placed on an ECMO machine, which basically replaces the function of the heart and lungs.

Grace was flown by LifeLink III air ambulance to the U of M Children’s Hospital, where she needed immediate life-saving surgeries and was put on life support. The virus was attacking her little newborn heart.

“We were in a trance,” said Brittany. “I don’t think we said one word to each other on the drive down to the Cities. We were both so numb.”

“It was a pretty hard-core deal, a tough sight to see,” said Gerard of when they finally got to see Grace. “She swelled up and didn’t even look like a baby at that point.”

A new heart was needed

Grace was on the ECMO machine for about six days. Her heart was not doing well. The doctors were trying to get the infection out of her body, but it had already done too much damage.

For the next two months, Grace would get better one day and then worse the next.

She had to be intubated numerous times.

“It was just a battle,” said Brittany. “We so hoped her heart would get better.”

The couple remembers the moment when the intubation tubes were removed from their daughter and they actually heard her cry for the first time. It was – and still is – a very precious sound to them and one they don’t get to hear as often as most new parents.

At times, it still feels like November to them. They both said time seems to stand still. Their two boys have only seen their sister twice since she was born.

Because Grace’s heart wasn’t healing, she needed a heart transplant. But by the end of December, they were running out of options because a heart had yet to become available.

Baby Grace Johnson surrounded by all the machines that help to keep her alive. (Contributed)
Baby Grace Johnson surrounded by all the machines that help to keep her alive. (Contributed)

On Jan. 8, the Johnsons made the difficult decision to go with a mechanical heart, called the Berlin heart.

According to Dr. Rebecca Ameduri, a pediatric cardiologist with M Health Fairview, the Berlin heart is a pediatric ventricular assist device that helps support a child until a suitable donor organ becomes available for transplant.

Only a handful of pediatric patients each year at the U of M Masonic Children’s Hospital, which is part of M Health Fairview, receive Berlin hearts or another type of pediatric ventricular assist device. Ameduri said that nationally, around 30 percent of pediatric heart transplant recipients are bridged to transplant with devices such as the Berlin heart.

Seven days after receiving the Berlin heart, there were complications and a large clot was forming that posed even more risks to Grace’s health. The couple knew the Berlin heart wasn’t going to work long term and the best option was a heart transplant.

At 10:30 a.m. on Jan. 24, Brittany was brought into a conference room. Gerard was back in Alexandria with the boys. The two parents often split their time between the hospital and home. She was told a heart was possibly available for Grace. The heart wasn’t perfect, but with the right person it would be a perfect match. The heart was bigger than Grace was at that point, but it was a viable option.

Baby Grace Johnson resting comfortably on her mom, Brittany's, lap after her second Berlin heart was put in. (Contributed)
Baby Grace Johnson resting comfortably on her mom, Brittany's, lap after her second Berlin heart was put in. (Contributed)

The couple decided to accept the new heart for their daughter. At that point, Grace had a second Berlin heart put in because the first one caused the clotting. Brittney and Gerard knew the risks of the Berlin heart far outweighed the risks of the new heart.

By 11:30 p.m., their daughter was being wheeled in for her heart transplant surgery. At 1:30 a.m., the heart had not yet arrived. Finally, at 3:30 a.m. the heart was there and had been transplanted into their daughter.

The Pediatric Heart Center at the hospital where Grace is at is one of the top in the nation. It typically performs 5-10 pediatric heart transplants each year.

It had a record month in January, successfully completing five heart transplants in 20 days.

A long road ahead

On Valentine’s Day, Grace’s new heart will have been beating inside her for 21 days. There are still plenty of risks, and another transplant down the road is not out of the question.

“Once a heart baby, always a heart baby,” said Gerard, who was holding the nearly two-inch manual for heart transplant recipients. “She will be on meds the rest of her life. The road ahead is terrifying.”

Brittany and Gerard explained that Grace will likely never go to a petting zoo, will never have any live vaccines, such as her MMR vaccination, and will never be able to have children because of all the side effects of the medications.

“This will be a life-long battle and she will be in and out of hospitals for the rest of her life,” Gerard said.

Brittany said it is so sad how the virus robbed them and their baby of a normal life and how it destroyed their daughter’s heart. She said it was probably a one in a million chance that a virus like that, similar to a summer cold, got to her baby.

“How does it happen that you go from, ‘Honey, I don’t feel good,’ to your daughter having a heart transplant and your whole lives change?” Gerard asked. “This is now our life. It changed our entire lives. It’s been a wild ride.”

Brittany said Grace has good days and bad days and that every time the phone rings, their hearts sink just a little bit. But they are both grateful for their parents and other family and friends who have been there to help with the boys when needed.

And they are most thankful that Grace is continuing on her journey and that in the months to come, her heart will be strong enough that she will be able to come home.

Gerard and Brittany started a Facebook page to catalog their daughter’s journey and invite people to follow along. Her page is called Amazing Grace. A GoFundMe page has also been set up.

Benefit planned

A community pancake feed fundraiser for the Johnsons will take place on Sunday, March 8 from 11 a.m. to 2 p.m. at the Leaf Valley Town Hall. Free-will donations will be accepted and there will be a silent auction. All funds will go to the family to pay for medical bills.

An account has been set up at Viking Bank in Alexandria and donations can be sent directly to the bank at: Viking Bank, ℅ Grace Johnson, 4277 Dakota St., Alexandria, MN 56308.