Live Day To Day – a continuation of Mothering Through Adversity

A continuation from Mothering Through Adversity . . .

Marina and her husband, Robin, have experienced many emotional ups and downs during their son, first year of life.  After receiving a diagnosis of Giant Congenital Melanocytic Nevus, Niklas has undergone numerous diagnostic tests and surgeries.

Marina remains optimistic about her son’s future and is the first to admit that there is always something far more serious her family could be dealing with.

“Things fall into perspective quickly.” Marina says when recalling the numerous young faces she sees in the waiting rooms of SickKids Hospital.   The common cold or minor illnesses seem more like inconveniences than anything else.

When asked about how this past year has affected her family, Marina admits that she initially overcompensated as Niklas’s mother until Robin stepped in and very matter-of-factly reminded her that Niklas doesn’t need her pity.

It’s not always easy learning to undo maternal instincts but Marina has found lots of support among an on-line community of bloggers.  Marina describes feeling a sense of connectedness reading real stories of families just like hers and not focusing on the gory images and tragic stories that flood her screen when she Googles Niklas’s condition.

“We all handle it differently.  I cry sometimes.  The girls (her two daughters) act out sometimes.  Robin is pragmatic and stays away from the Internet.” Marina answers when I ask her about the stress associated with a family members diagnosis.

But her on-line community has empowered her with research and anecdotes that prove to be effective munition when she joins forces with Niklas’s doctors and the same bloggers who offer advice on tissue expansion also permit her to let go of the stress and anxiety that she is carrying with her.

“Live day to day and don’t let it control you.  It will control your life if you let it.”  That is the message that Marina wants to send to other parents dealing with a child’s illness.

Take a moment to review some of the bloggers that Marina takes inspiration from:

Checking Back With Zac

Wonderful World of Vance

News From The Nagels

Journeys With Joshua

Amanda and Mason Waite


Mothering Through Adversity

“He’s the luckiest unlucky baby,” says his mother, Marina with a wide smile.  You wouldn’t know from talking with her that her infant son is recovering from major surgery.  Her optimism is as authentic as her love for her family.

More than six years ago, Marina and her husband, Robin, decided to have a family.  When things didn’t go as smoothly as planned, they turned to fertility treatment and were fortunate to have a healthy daughter.   A few years later their joy multiplied when another daughter joined their family.  Counting their blessings, Marina and her husband decided to graciously accept the gift of their daughters and considered their family complete.

I remember three years ago, sitting with Marina at a children’s consignment sale.  She was giddy at the thought of no more Exersaucers cluttering her family room and when I asked her if this meant that there were no more babies in her future, she emphatically replied, “Nope.  We’re a two-kid family.”

Life certainly does laugh at our plans.  Almost two years ago, Marina unexpectedly became pregnant for a third time.  She and her husband were overjoyed albeit a bit surprised.

“We were shocked!  I couldn’t believe it when I found out that I was pregnant.  How did that happen without fertility meds?” Marina says followed by a playful laugh.  “I guess you can’t plan everything!”

Marina endured the usual question during her third pregnancy: “Are you hoping for a boy?” to round out her family of girls and she answered people sincerely by saying that she didn’t care what the sex of the baby, all that she wished for was (s)he be healthy.

Secretly, Marina was anxious.  She felt as though she had tempted fate twice before and won.  She had two healthy babies.  What more could one ask for?  Marina’s fears were brushed aside by most everyone she talked to as “normal” especially for mothers with more than one child.  Nonetheless, she couldn’t let the suspicion go.

After a fairly uneventful pregnancy, Marina went ahead with her planned C-section.  Robin was by her side when they welcomed their baby boy into the world on an early June morning.

Immediately, Marina sensed something was wrong.  Having had two previous C-sections she knew what to expect and reading the expressions on the faces of the medical staff and her husband, she knew her worst fear had been realized.

“They definitely didn’t handle it well at all.  I guess everyone was in shock.  It’s not something you come across every day.” Marina says casually, having forgiven the medical team for their lack of composure.

At first glimpse her tiny son looked dark purple.  His skin wasn’t the pinky hue she’d been expecting and seen twice before.  Immediately the doctors began calling for specialists to make their way to the OR.  Marina felt helpless lying on the table, her stomach being tethered back together, watching her son being examined under lights on a table a few feet away from her.

What seemed like hours later, but in reality was probably minutes, a nurse handed Marina her son.  With her husband by her side, she held baby Niklas in her arms for the first time and instantly fell in love.  Their special moment abruptly came to an end when not even a minute later, Niklas was taken the Neonatal Intensive Care Unit (NICU) because he was experiencing difficulty breathing.  That turned out to be un-related to the skin condition, but Marina was unsure of what was happening and feared the worst.

An hour later in the recovery room, a young female doctor made her way over to the bedside and gently explained to Marina that her son was born with a very rare and potentially fatal disease, Giant Congenital Melanocytic Nevus.

“I didn’t know what to make of all she was saying.  All that I was heard cancer, and mortality.  I think that I blocked it out.”  Marina says of those first few minutes when she learned her son wasn’t born “perfect”.  In a daze of operative drugs and post-partum hormones, Marina continued to sit in the recovery room frightened that her son might not make it.  She was told that she wouldn’t see Niklas again for at least 24 hours because of his status in the NICU and that she was unable to sit in a wheelchair due to her c-section.

“I didn’t think, at first, that it was that bad until Robin went to speak with the doctors.  We had always agreed that immediately following the delivery; I would stay in the hospital with Niklas while Robin attended his graduation (from an MBA program) that afternoon just a few blocks away.  He’d come back to the hospital later and in a few days we had planned to head home.  But when Robin came back into the room after his meeting with the doctors and told me that he wasn’t going to the graduation, I knew something was wrong.”

Staying in the hospital to recover from her C-section ended up being a temporary reprieve for Marina.  Without Google at her fingertips she was able to digest what information the doctors had told her.  Keeping positive was easy without the evils of Wikipedia permeating her brain.  Robin wasn’t so fortunate.  He went home and preceded to do the very thing the doctors had advised against: he went online to research more about his son’s condition.

Marina explains to me that most people are not born with moles but acquire them over their lifetime.  By age 20 most people have 20 moles but because Niklas was born with so many birthmarks, particularly the large birthmark on his back, his propensity to develop skin cancer is much, much greater.

Congenital Melanocytic Nevus is a dark mole, which cover the body.  There is usually one main nevus that can have hundreds of satellites.  These moles have a high likelihood of either being cancerous or turning cancerous, even in childhood.

The reason the medical staff cautioned against self directed research is that they were still uncertain the extent of Niklas’s diagnosis.  Statistics pummeled Marina and Robin.  Only 0.02 percent of babies are born with Congenital Melanocytic Nevus.  Of those, 1/3 will have nevi on their brain or spinal cord and a very small percent will develop complications that can result in death.

“He’s the luckiest unlucky baby!” Marina says again.  Niklas’s MRI determined that he does have a nevus on his brain but so far he has been developing like any normal infant and recently celebrated his first birthday.  However, it is the fear of the unknown that has weighed heavily on both Marina and her husband.

That is not to say that Niklas hasn’t had his share of challenges over the year.  He has had surgeries to remove nevi (called excision) and is going to undergo tissue expansion surgery.  Like a sci-fi movie, doctors insert a balloon under his skin that will cause it to stretch.  Once the skin has expanded enough, it will be stretched over the area where the birthmark will be removed.  Marina admits that she feels very lucky to live so close to Sick Kid’s Hospital home to some of the world’s leading physicians and surgeons.

In addition, Niklas must stay out of the sun, or completely covered and visit with a dermatologist every six months for the rest of his life.

In spite of this adversity, Marina and Robin remain optimistic and thankful that this all they have to contend with.  “Sitting in the waiting room for Niklas’s plastic surgeon or meeting with other specialists puts things into perspective.”

Please watch for Part Two of my interview with Marina as she shares how Niklas’s diagnosis has changed her family and how she has used social media as a support network.

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