A mothers instinct.

A friend recently told me having a baby is like planning a holiday. Your journey is all mapped out before take off and you have so many great ideas about what it’s going to be like. Then, when you eventually stretch those legs and walk off that long 24-hour flight, you realize you haven’t landed at that dream destination after all and this is not at all what you expected….

Georgia Marie Fainga’a (Baby G, Gigi, Gidge, George) was born by emergency C-section on 23 April 2017 after a traumatic labor. Georgia then spent two weeks in hospital in the Special Care Nursery initially due to hypoglycemia (low blood sugars), then prolonged jaundice and some initial feeding issues that saw her lose over 10 percent of her birth weight within her first week of life.

These two weeks proved to be by far the longest and hardest of my life. To put it into perspective: when you plan to have a baby, no one tells you how heartbreaking it’s going to be if you cant take your baby home with you straight away. No one tells you how tormenting its going to feel setting your alarm every 3 hours during the night to sit up in bed and express milk for your baby who is kilometers away in a hospital crib. And no one tells you about the angst you are going to feel walking in and out of that hospital everyday to spend every waking hour with your baby, watching other mums and dads happily leaving the hospital with their newborn babies in tow…

After two very long weeks Colby and I were given the green light to bring Georgia home. She had put on enough weight and was feeding really well. But as we drove away from the hospital that morning, those ‘new mum’ feelings of happiness and joy I knew I was supposed to be experiencing just weren’t there. Why?

A mother’s instinct. Never underestimate it.

I knew something was just not right. To backtrack a little - during the two weeks Georgia spent in hospital the doctors made a split second decision to conduct some extra tests on Georgia as they too suspected something may have been a little different. So as results from these tests slowly trickled in, I was reassured time and time again that her results had all come back normal. But still I awoke each night to feed Georgia feeling an overwhelming sense of anxiousness – something was just not quite right….

This was confirmed a week later when we received a devastating phone call from the hospital paediatrician. The last outstanding test result had come back.... it had picked up that Georgia has a very small genetic mutation known to cause a rare genetic condition called Sotos Syndrome. So what the hell did this mean? The paediatrician tentatively advised " i wouldn't go and google the condition too much just yet." He went on to explain that it is a highly variable condition, affecting those diagnosed quite differently, and so I should avoid being confronted with worst case scenarios for the time being. Some patients are only affected very mildly, others quite severely. Some children aren’t diagnosed for years, and some adults are only now being diagnosed after going undetected for the first quarter of their lives. But naturally, the lawyer in me frantically started searching the net. I wanted facts, statistics and answers:

Sotos Syndrome: ‘ a rare genetic disorder characterized by excessive physical growth during the first years of life. Excessive physical growth often starts in infancy and continues into the early teen years. The disorder may be accompanied by autism, mild intellectual disability, delayed motor, cognitive, and social development, hypotonia (low muscle tone), and speech impairments. Children with Sotos Syndrome tend to be large at birth and are often taller, heavier and have relatively large skulls (macrocephaly) than is normal for their age. Signs of the disorder, which vary among individuals, include a disproportionately large skull with a slightly protrusive forehead, large hands and feet, large mandible, hypertelorism (an abnormally increased distance between the eyes)(large inter-pupillary distance), and downslanting eyes. Clumsiness, an awkward gait, and unusual aggressiveness or irritability may also occur.

How f**king confronting.

After meeting with a geneticist who specializes in the field, we now have a little more clarity of what this means for Georgia. We do know her height and head circumference will increase quite rapidly from now into the coming years, before leveling out when she reaches adolescence. Sotos children also have distinctive facial features which we are told Georgia will grow into and become more noticeable as she ages. It is also probable her early developmental milestones such as crawling, walking and talking will be markedly delayed but she will eventually get there (they say children with Sotos are simply travelling on a ‘slower train’). What we don’t know yet is the extent to which it will affect her intellectually – maybe mildly, maybe quite severely. Just like the paediatrician, the geneticist advised the affects are so variable it is near impossible to predict how it’s going to play out for G at such an early stage.

Coming to terms with such uncertainty is not easy. It’s by far the hardest part. The control freak in me wishes a doctor would simply turn to me and say: “ this is exactly what’s going to happen, and here’s a checklist of everything you need to do along the way”. Unfortunately – it’s not going to be like that. I don’t have that magic crystal ball to see into the future, and as hard as it is I just need to accept that. I can't control what is going to happen. Not long after we received Georgia's diagnosis my Dad gave me some very frank and blunt advice as I cried in the comfort of his arms. "Loren, when faced with a situation such as this, all you can do is think to yourself: is there something i can do at this very moment to help? If yes, do it. If not, don't worry about it. Just focus on the positives." He's right. All I can do is control the controllable and focus on the positives (there are so many!). And what i can can control is how I approach each day. So, I'm going to wake up and embrace the challenge ahead. I'm going to wake up and be thankful. Thankful she is here, thankful her condition is not life threatening, thankful I have an amazing, loving and admirably positive husband, and above all else, thankful we have been blessed with a beautiful, unique soul, who already fills us with so much love and happiness, despite the challenges I know we await.

I know there are so many people out there in far worse situations than this and I particularly feel for those families who sadly never get the chance to meet their precious babies. But there is certainly no easy way to sugarcoat the fact your baby has been diagnosed with a rare genetic condition. It’s a massive kick in the guts and it hits you like a ton of bricks over and over again. After Georgia was diagnosed, I cried every single day. Sometimes a little, sometimes a lot. I was in a very dark, lonely and isolated place for quite a while and every single morning was an uphill battle to simply pull myself together and drag myself out of bed. But I think that’s completely natural. And as my GP assured me, she would be more concerned if this wasn't my initial reaction. I needed to let myself grieve, be extremely angry and upset at the world and mourn the fact my first experience of parenthood wasn't going to be at all what i had initially planned, before I could really pick myself up off the floor and wholeheartedly say to myself “fuck you condition – just watch us shine”.

So here’s the plan: join our journey and watch us shine. No doubt there are going to be days I feel totally and utterly defeated, but I promise to brutally and honestly document them. I know though that the good will far outweigh the bad, and I promise to share these moments with you too.

I’ve always been a firm believer that things happen for a reason and I just know I was destined to be Georgia’s mum. There is no woman or mother more ready for this challenge than me.

Raising Georgia is my purpose – she is my Queen and now my whole life.