Natalia Malnar's Story
Condition: Ebstein Pulmonary Syndrome
When a child is born with a congenital heart disease it not only affects the child, but is also a life altering journey for the parents as well. Natalia Malnar, was born with a rare heart disease, and knows the process to a healthy life is a hard battle. It is her parents Anton and Theresa; however who remember all the courage and the heartache the family went through.
Natalia Malnar was born with Ebstein pulmonary syndrome, which is the congenital absence of the pulmonary valve, with displacement of the pulmonary annulus to the pulmonary bifurcation. As if those obstacles were not enough of a trial to face, Natalia was also born with skeletal muscle abnormities of the forearm and jaw.
Natalia doesn’t remember the early years when she was in the hospital all the time, her mother on the other hand still remembers the details vividly.
Natalia, who was born in 1981, spent over one month in neonatal intensive care. During labor, Theresa recalls the terrifying experience of almost losing her baby. Theresa was two weeks overdue and was admitted to the hospital to induce labor. She said she knew something was wrong with the baby once they hooked her up to a drip to induce labor. The baby immediately starting kicking and moving around and the machines “started to go crazy.” Theresa said she knew right away that the chemical in the drip was affecting Natalia’s heart and she was trying to survive.
When the baby was delivered Theresa recalls there were no cries, and “as a mother you know something’s not right.” Turns out her instincts were right, for at that moment Natalia was blue and the doctor took her and they tried to revive her.
Theresa recalls the horrifying moment when she heard the doctor say, “We’re going to lose her.” Those words still “echo in my mind til this day,” Theresa said.
Theresa still finds her daughters medical conditions hard to believe, as she had a good pregnancy and there was no indication of complications. Even ultrasounds did not show any evidence of heart problems.
Natalia was in the hospital for approximately one month after birth. Even after she was released from the NICU she still had to come into the hospital every week for the first few years of her life.
In 1987 Natalia was required to have open heart surgery in Edmonton. Doctors could not believe this rare case existed so close to home, and requested that Natalia be their study subject. Natalia’s parents decided that they would allow Natalia to be the subject of their study, with the hopes that it would help other children and families.
After watching the doctors examine her baby however, Theresa decided that she was no longer comfortable with Natalia being their research subject.
“I found it extremely hard when I saw the poking and prodding, I didn’t want it anymore. She was a human being and it seemed so impersonal to them (the doctors).
“I said they could use her information but not touch her anymore.”
The surgery at this point was needed to, as doctors’ report, “closure ventricular septal defect, resection sub aortic ridge and right ventricular outflow patch for relief of regional obstruction, with placement of epicardial ventricular pacing system for acquired complete heart block.”
In layman’s terms, Natalia had two holes in her valves, and one pulmonary valve was missing. Doctors had created a pulmonary valve out of pig skin, which was the better option instead of using a mechanical since the pig skin adapts the best to humans. At this time Natalia had a children’s pacemaker implanted.
The preparation for the surgery was also hard for Natalia and her parents. Although Natalia had a wonderful surgeon, the procedure was long and nerve-racking for her parents. Theresa recalls when Natalia was given a sedative before surgery. She was playing with her dad and jumping on the bed, and once the sedative kicked in Natalia “started to cry and cry because she didn’t know what was going on,” recalls Theresa. “She asked mom what’s happening.”
That was Natalia’s first surgery and doctors estimated it would take three hours, based on all the x-rays from when she was born.
The surgery took an unanticipated turn however, and the doctors discovered more then the x-rays showed resulting in a longer surgery time than expected. In total Natalia was in the surgical room for seven hours, as a result of several complications during the process.
One of these problems was the stress the surgery placed on Natalia’s heart which caused her to have a heart attack.
Another complication was, due to the fact that Natalia was opened up for so long, the heart swelled and the doctors could not close her up. She stayed in ICU with her chest wired and covered. When the swelling finally went down they were able to go back and close her chest up.
The crucial hours after surgery were difficult for Natalia’s family. The doctor suggested that her parents go home and try to rest and she would call if things took a turn for the worse. Anton and Theresa were given a beeper and went home for a few hours.
Theresa recalls that at two a.m. the beeper went off. “That was the first time in my life that I had fear like that.”
Luckily for Natalia and her parents, the beeper went off accidentally and when Anton and Theresa arrived at the hospital the doctor informed them that Natalia made it. Theresa recalls the doctor saying “your child made it. The sheer strength of this girl and her will to survive pulled her through this. She’s a very strong girl and she wants to live and fight against this.”
Despite the good news Natalia was not out of the woods yet as right after surgery her lung collapsed. Her mother recalls having to lightly pound on Natalia’s back and massage it to make sure fluid and phlegm wouldn’t have a chance to build up. A nerve was also hit during the surgery which caused temporary paralysis on the left side of Natalia’s body, which doctors explained to her parents can often happen during surgery. Natalia went through the rehabilitation process and after a few weeks started to get her full movement back. Her mother recalls how Natalia had to “lift her leg like a wooden leg for a few weeks after surgery.”
Fortunately, when Natalia was released from the hospital after surgery everything seemed to be good. The pacemaker needed to be regularly checked and Natalia remained closely monitored during her recovery process.
The recovery process was a difficult six months for Natalia, who lost weight and some hair as well. According to doctors, this was mainly due to the medications she was taking and the physical stress of the whole experience on Natalia’s body.
Natalia managed to return to a normal lifestyle until 1995, when she had to have another surgery. One of the leads that connected Natalia’s pacemaker to her heart had fallen out of the heart. Theresa recalls the moment it happened, she and Natalia were watching TV and Natalia had gotten up to change the channel when she fell onto the ground. Natalia also recalls that moment, saying “it felt like I was dreaming. I could hear her (Theresa) but couldn’t talk.”
Because of the backup system in the pacemaker, Natalia survived.
Theresa rushed Natalia to the emergency department at the hospital where it was determined that she would need another surgery. This time she would have to go back to Edmonton for surgery. At that point doctors did a “resection right ventricular outflow muscle bundle and placement No. 23 Carpentier Edwards pulmonary valve.”
After this second surgery Natalia went into cardiac arrest and had to be resuscitated with the shock paddles. She had a mini relapse in ICU and stayed in for a couple of weeks.
After being released Natalia had to go in for a check-up every three months to check her pacemaker and heart rate to make sure everything was working smoothly.
In 1996 Natalia had another minor surgery to replace her children’s pacemaker with an adult one; however the operation was a smooth one.
In 2001 Natalia started on Nifedipine for the purpose that it “might defer the need for aortic valve replacement in individuals with chronic aortic insufficiency.” She took Nifedipine until 2007, when her doctor suggested it was no longer needed.
By 2003 Natalia was a veteran at surgical procedures when she went in for another minor surgery to get her battery changed in the pacemaker. It was a minor procedure and she was in and out of the hospital quickly.
At this time Natalia is preparing for the thought of yet another surgery. Since her pulmonary valve was last replaced Natalia has grown and that valve has stretched and started to rip and there is minor leakage. She will have another open heart surgery in the next few years to repair or replace old patches she has outgrown.
Theresa believes a lot of the courage and strength her family received helped them through all of the surgeries and ordeals. Although the Malnars had support from family and friends, Theresa says a lot of her comfort and support came from the Ronald McDonald House in Edmonton. She and Anton stayed there during both surgeries that Natalia had in Edmonton. Theresa says it was great to meet other families going through the same thing or worse. “It was a comforting place,” she said. “They make it like a home. Everyone there is incredible.
“It was fantastic,” she adds, “certainly helped. There’s lots of help out there.”
She also mentions the attention given to the family as soon as they found out about Natalia’s problems. They automatically got a social worker that helped them. The option is there for anyone needing it. “They were there to take care of everything, bookings and stuff. It was a comfort. It really helps you through everything.”
“Help is out there, don’t be afraid to ask.”
With all the surgeries and complications, Natalia has survived them all and is stronger then ever. She is currently working in the accounting department at Marks Work Warehouse and has almost completed her certification as a certified general accountant.
Natalia said that despite everything that has happened she doesn’t let things hold her back. “I believe it’s important for people to stay positive,” says Natalia. “You need to continue with life and do your thing.”
Natalia still has some physical issues as a result of her condition, where her body works a lot harder to do things, but that doesn’t stop her from doing the things she wants.