I remember watching Walt Disney’s ‘Snow White’ for the first time. I have a vivid recollection of Snow White in her glass coffin in the forest, the seven dwarfs with their heads sorrowfully bowed, caps in wringing hands, her lips still ruby red and her skin as white as snow. Waiting, silent and still, for true love’s first kiss.
Approximately 30 years later, I was staring down at my son in a tiny glass-like coffin in the Neo-Natal Intensive Care Unit (NICU) at the Royal Women’s and Children’s Hospital in Melbourne. Like Snow White, this glass coffin-like structure was keeping my son alive. But unlike the fairytale, his lips were tinged blue despite the oxygen being forced through his lungs and his body more of an ashen grey than white. I could not hold him as he could not breathe without mechanical assistance. And yet despite knowing the logic behind him being in the humidicrib, all I wanted to do was drag my precious baby boy out of the glass case, hold him to my chest, let him smell me and I him, let him feel and hear my heart once more, just to know I was there. And a part of me kept thinking that if only I could kiss him, for surely no kiss is as true as a Mother’s love, he would open his eyes and the nightmare would end and the fairytale would start.
Worldwide, 15 million babies are born premature each year. That’s one in 10 of all babies born. Of those 15 million, one million will die. In Australia alone, 25,000 babies are born premature. In 2014, my son was one of those 25,000. But I didn’t feel like one of many. I felt like I was the only one and my husband and I were alone. We had support…but the worry and pain was ours to bear alone, only we could work through it. Everyone else…their world kept turning…where ours had stopped. And if my son died, I didn’t know if I wanted it to keep on rotating.
When my son was born 7 weeks premature, things went bad – quickly. An unforeseen pre-term labour meant a hasty delivery. If you see the picture of my husband and I when my son was born, we are both smiling…but it’s the plastic smile you give strangers with a camera, to be polite. My husband and I were still treating it as a work type emergency, a critical situation, something we could relate to, so as brutal as it sounds…we could be distant while aiming for ‘desired outcomes’ with a calm disposition. When they first put my son on my chest he was only there for seconds until I watched him slowly turn from a healthy pink…to a grey, his lips turning blue. I remember looking up at my paediatrician, questioningly. We shared a look, she of course already knew, but was waiting, giving me as much time as she could…and I felt a cold fear before she took him away from me, kindly yet abruptly. It was then that I knew we had a battle ahead.
It never ceases to amaze me the type of comments people say during times of hardship. Any hardship. You know that generally people are trying to come from a good place, to try and say what is ‘right’, what they perceive will bring you comfort. But I still think when some people are born, they should just be issued with an ‘acceptability filter’ over their mouth because they will just never get it. In the days, weeks and months ahead I heard a lot of what I started to call ‘Premature Assumptions.’
First came the ‘blame’ for the pre-term labour. Which of course was apparently mine to bear. ‘Did you eat sushi/drink/eat soft cheese?’ Or ‘Did you try and express milk manually?’ And ‘Don’t you think you pushed yourself too much in the 40 degree Melbourne Summer heat and that could have bought it on?’ I’m sure women in the desert heat and tropics would be shocked to learn they could take a baby to full term. Regardless, the guilt kept me awake in my hospital room, without a cot next to me, while I tried to express the liquid gold, which would hopefully hasten my son’s recovery, with a hospital grade breast pump. I can still remember the wheeze it made.
Next were the ‘you are lucky’ comments. ‘Oh, I feel like a whale at 39 weeks, I’d LOVE to give birth at 33 just to relieve the pressure and discomfort! ‘ And ‘Hey, you were due after me…why did you give birth first? That’s not fair!’ And finally ‘Well at least being prem you can leave them in the hospital each night and catch up on some sleep before visiting them again.’ I had nail marks in the palms of my hand during those conversations in an attempt to focus on that pain rather than say something I’d regret.
The third type of comments were the ones which were odd and made me bristle slightly at the time…but I knew were worth listening to, because these were from families who had prem babies. One friend said ‘Look at the pictures of my son, he was 33 weeks and weighed less than yours. And he is now a healthy, active and intelligent 3 year old.’ Facebook verified it to be true. Another who had prem twins said ‘I know it’s the last thing you think you can do, but try to take the time to rest and recover from your surgery. You’ll be exhausted when you go home from all the to-ing and fro-ing from the hospital twice a day when you are delivering milk like a cow.’ They had survived the same experience. They gave me hope.
When the pathology tests came back indicating that I’d had a placental infection which caused the labour, I almost cried with relief. Not my fault. It wasn’t my fault. Thank God I had an excellent obstetrician who ignored my protests that they were just bad Braxton Hicks and said ‘For whatever reason, your uterus is a hostile environment and that baby needs to come out NOW.’
I was also guilty of making assumptions about having a premature baby. So let’s address some of them:
1. You don’t get to bring your prem baby home when it’s born. Nope. It’s supposed to cook for 40 weeks for a reason. Your baby will be kept in hospital until it grows close to full term and is medically stable. This can take months, depending how prem and how many complications your baby may have.
2. Once your baby is home, it’s still not over. Being prem and that cute generally comes at a cost. During the first Winter you’ll discover the ramifications of premature lung disease, the anaemia, whether they are easily jaundiced…the list goes on depending on what complications your baby experienced. It’s gut wrenching. Again. Hang in there. You’ve lived through the uncertainty before and can again.
3. People get the ‘corrected’ and ‘chronological’ ages of your baby confused. The ‘corrected’ age is when they should have been born. ‘Chronological’ is when they decided to make their entrance…generally unforeseen and earlier than expected. Your paediatrician will assess milestones on the ‘corrected’ age…i.e. your original due date. GPs will often get confused between the two.
4. It takes prem babies a while to catch up. So don’t compare your child to your friends full term bub, it will just make you anxious. It is estimated to take up to 2 years for a prem baby to ‘catch up’ with his peers. And that’s ok.
5. You will still worry. A lot. Any cough, sniff, rash, slight temperature change, loss of appetite, change in nappies will possibly give you palpitations. Because these changes are what you watched for during weeks, sometimes months on end in the NICU or Special Care Nursery (SCN). Some people will think you are overreacting. But until they’ve lived through what you did with your child, they have no right to make premature assumptions.
6. Prems will take longer to settle during sleep times. Remember how noisy the NICU and to a lesser extent the SCN was? With alarms always going off? (And you silently begging, please don’t let that be my baby, and feeling that guilty relief when it wasn’t?) The light-filled the rooms with the flashing and beeping monitors? Nurses hurrying, talking quietly from one Neo-natal crisis to another? Yep. So trust me, if you try to put your prem baby into a darkened and quiet room when you get home…it’s probably not going to work. That’s not what they’ve experienced. We started our boy in a bassinet in a light filled busy living room and slowly moved him towards the dark and quiet over a series of weeks.
7. Prems cost more. Prem’s clothes cost a lot when you are looking at 00000 and below. The prem nappies are also costly. The weeks of hospital visits mean extra parking costs, time spent in cafes waiting for the next skin to skin feed. Prems take longer to recover from ailments, need multiple courses of antibiotics, often require ongoing scans, specialist appointments etc. There will be added stresses on your relationships. For your partner, you will both be tired, worried and it will take it’s toll. Remember to talk it through. If you have other children, you’ll have to rely on friends and family for extra baby sitting duties…and you’ll feel guilty for leaving them behind while you are trying to keep your newborn alive. Of course you don’t care about what it costs to keep your child well, financially or emotionally. But it’s worth being aware of due to the extra stress it can cause.
Over a year ago when I looked down at my son in his glass ‘coffin’ I said to my husband ‘He looks dead in there.’ He replied he knew I was going to say that. Fighting back tears, with my voice breaking, I said ‘If he survives this, we are having the biggest welcome home party for him ever.’ My husband said ‘Whatever you want, my love.’ But we didn’t. Because when he did come home, I just wanted to hold him. I didn’t want a fuss, I just wanted him well. Now it’s over a year later. He’s almost two. Our family survived over a year of multiple hospital visits and scares during which I seemed to have lost weeks of the month, even though the visits only lasted 10 days at most. So on his first birthday, we had a small party with family and close friends…including one dear and highly talented friend who made him the most amazing cake and thus I was gratefully spared the Birthday Cake Bastardary anxiety of previous years.
When driving back from my son’s 12 month paed appointment (10 months corrected, thank you!), my four year old daughter started to compose a song in the car. It was how her favourite superhero – Batman – was going to find her house so she could go to the toilet and have a wee. As you do. The chorus went ‘BATMAN, BATMAN, OH YEAH BATMAAAAANNNN!’ And then I heard my son, my laughing, beautiful gap toothed (with six teeth and two more breaking through) boy, join in singing ‘Batman! Batman! Batman!’ He couldn’t (wouldn’t) say ‘Ta’…but he could say ‘Batman’. But my husband and I shared a look, remembering, smiling.
Today, almost two years later, he is in the 90th percentile for height and weight…and that’s his chronological age, not his corrected one. He is taller and heavier than his full term sister was at the same age. My son is proof ‘normal’ for a prem baby is possible.
To all those parents with miracle babies, hang in there, even when you can only deal with an hour at a time. Only 22 months ago my son didn’t have enough breath to even keep his eyes open…just like Snow White. Now he’s singing ‘Batman!’ with his sister. I know his proud father thought it was entirely appropriate that a Superhero was one of his ten first words.
So through all of the Premature Assumptions you will experience, remember my Batman baby. While there is life, there is hope. And don’t ever lose hope.
Thank you to Dr Mark Umstad and Dr Diana Johnston, my obstetrician and Eric’s paediatrician respectively, and all of the wonderful staff in the NICU and SCN at the Royal Women and Children’s Hospital for keeping my son alive. Words will never be enough to express our gratitude, but hopefully over time our actions will.
Please consider donating to the Miracle Babies Foundation to support premature babies and their families.