‘Mika has changed me’

Henriette Lamprecht – Cara and Keiran Mans live in the knowledge that their baby boy suffers from constant heart failure and could die at any moment.

Diagnosed with aortic valve stenosis a week after birth, Mika Mans already had much to endure in the first seven months of his life.

Looking at photos of Mika smiling brightly and a million angels dancing in his big blue eyes, it’s difficult to imagine Alpha 1 Antitrypsin deficiency (a genetic liver disease) and various complications, including CMV infection and septicaemia after a heart operation at the Netcare Christiaan Barnard Memorial Hospital in Cape Town.

Mika’s mom, Cara, describes aortic valve stenosis as the thickening of the aortal valve due to abnormal tissue, resulting in highly increased blood pressure in the heart.

“This increased pressure causes the mitral valve to leak and puts immense strain on the lungs since the pressure increases there as well.”

Alpha 1 Antitrypsin deficiency means Mika’s liver produces a mutated enzyme which will result in lung disease (emphysema) later in life. This can happen at any time, but is most common after the age of 20.

During her pregnancy Cara constantly experienced flu like symptoms, but nothing else felt out of place and all sonars seemed normal.

“Our doctor assured me I was fine and nothing seemed out of the ordinary. In retrospect I probably had a serious CMV infection during the last months of pregnancy,” Cara says.

Cara and husband Keiran expected a “normal, healthy baby boy”, but after a quick technician’s scan at the Windhoek Medi-Clinic, Mika’s paediatrician, prof. Clarissa Pieper, told Cara and her husband “something is seriously wrong”.

“We rushed to dr. Hugo-Hamman, a paediatric cardiologist at the Roman Catholic Hospital where Mika was diagnosed with very serious aortic valve stenosis with all the resulting complications.”

Even though the initial diagnosis was a shock, the reality of it all had not yet sunk in.

“The following day was much harder on us. Mika had heart failure and needed surgery in Cape Town as soon as possible.”

Cara and Keiran had to rush to organize Mika’s passport and arrange everything with their medical aid as soon as humanly possible. Amid the pressure of getting everything together, Mika was fading fast.

“It felt like he was dying in my arms as we waited at Home Affairs. As soon as his passport photo was taken, I started running to the Roman Catholic Hospital.

“We thought if he were close to his cardiologist, he could pull through.”

Upon their arrival at the hospital, Mika was immediately admitted and put on oxygen. Although stressed and overwhelmed, Keiran kept begging Home Affairs to hurry up.

“Because of the valiant efforts of a lady at Home Affairs, risking her job to help Mika, we were able to fly to Cape Town the next morning. He was operated the next morning by the famed heart surgeon, dr. Susan Vosloo.”

Mika underwent open heart surgery at 12 days old. Due to complications he had to spend almost two months in paediatric ICU. At six months Mika also underwent attempted balloon valvuloplasty. This was because his aortal valve had started constricting again.

This operation was aborted because the valve opening had closed and deformed to such an extent that a safe valvuloplasty was impossible.”

Other than the actual operations, Mika is constantly on diuretics and heart medication. While some medication is taken daily, his heart medication is due every eight hours.

Mika will need more open heart surgery in the very near future to hopefully rectify the aortic valve stenosis. Later on he will need a liver transplant to cure the genetic liver disease.

Cara admits she and Keiran felt “very isolated” having a chronically ill baby at first.

“We have no close friends or relatives who had gone through a similar situation.”

During Mika’s lengthy stay in hospital, the couple met other parents with similar circumstances.

“It helped. It normalised our reality and we drew strength from each other’s stories. Recently we joined the Okanti Foundation, a Namibian organization which supports families with chronically ill children in various ways.

“In working with the organization and with parents dealing with similar problems, our situation and Mika’s ailments become easier to deal with.”

Yes, her son’s health issues affect all aspects of their lives, Cara admits.

“We are scared that our daughter feels unloved, because Mika requires a certain amount of attention. We worry about our finances. We worry about his future and how much of a normal childhood he will have.

“It puts our relationship under pressure as well. I carry the stress of keeping track of his medication while Keiran has taken over the role of our daughter’s primary caretaker.

“We have to keep his medication on schedule, to make sure he doesn’t bump his head, get too upset, too excited, too sick, etcetera.”

Her little boy has changed her, says Cara.

“Mostly I realise everyone is struggling with something in life, everyone has their own story, who am I to judge them?

“I’m more patient, compassionate and definitely more organised – and very tired.”

Mika has been Mr. Personality right from the start, says his proud mom.

“In ICU the nurses would complain because he wouldn’t tolerate a wet nappy for more than a second. He would wiggle and squeak, making a mess of his tubes, causing nursing staff all kinds of grief, because he had officially wet his nappy!”

Mika loves smiling, playing, eating and standing.

“In his mind he’s a crawling, climbing, walking toddler, but his body is not quite there yet.

“He’s had such hectic experiences in the short span of his life so far, that the small things don’t bother him. He is so strong, he doesn’t cry about any old thing and takes his shots like a champion! Regardless of his medical issues, Mika brings great joy to the whole family.”

*Mika and his family is supported by the Okanti Foundation, which supports Namibian families with a chronically ill child emotionally and contributes financially towards holistic therapies and medication.

Banking details: Nedbank, Daniela Medical Trust, branch code 461609; account nr. 11010022195, re: Mika Mans. Michaela Tietz - 081 127 8544 or [email protected].