On this episode of the Double Happiness Multiplied podcast, we talk with Consultant Neonatologist Doctor Patricia Woods from King Edward Memorial Hospital in Western Australia about what to expect when you have babies in the Neonatal Intensive Care Unit (NICU).
Mum of quadruplets Jannelle Snaddon walks us through her NICU journey.
Psychologist Doctor Monique Robinson offers practical advice about taking care of your emotional wellbeing when you have babies in NICU.
I’ll share my NICU story with you and I’ll read a moving letter from a micro-premmie mum written to other parents of premature babies.
What does pre-term mean?
A Preterm or Premmie baby is defined as being born alive before 37 weeks of pregnancy are completed. There are sub-categories of preterm birth, however, based on gestational age:
Extremely preterm, or micro premmies, are born at less than 28-weeks’ gestation,
Very preterm are those babies born between 28 and 32-weeks’ gestation,
And, moderate to late preterm, which are babies born after 32 weeks and before 37-weeks’ gestation.
Why does preterm birth happen?
There are many reasons preterm births occur, the most common causes include multiple pregnancies, infections, and chronic conditions such as diabetes and high blood pressure. However, oftentimes no cause is identified but may be due to genetic influences.
Pre-term birth facts
Worldwide, an estimated 15 million babies are born too early every year. That’s more than one in every 10 babies. Sadly, of these babies, approximately 1 million will die each year due to complications of their preterm birth.
Prematurity is the leading cause of death in children under the age of 5 years, globally.
In almost all countries with reliable data, preterm birth rates are increasing, with stark inequalities in survival rates around the world.
In low-income settings, half of all babies born at or below 32 weeks die due to a lack of feasible, cost-effective care, such as warmth, breastfeeding support, and basic care for infections and breathing difficulties.
In contrast, babies born at or below 32-weeks in high-income countries will almost always survive.
Where and when does preterm birth happen?
Preterm birth is a global problem despite more than 60 per cent of preterm births occurring in Africa and South Asia. In lower-income countries, on average, 12 per cent of babies are born too early compared with 9 per cent in higher-income countries.
There is also a dramatic difference in survival rates of premature babies depending on where they’re born. For example, more than 90 per cent of extremely preterm babies born in low-income countries die within the first few days of life; yet less than 10 per cent of extremely preterm babies die in high-income settings.
These statistics are interesting and for some will offer reassurance and a glimmer of hope during this time of immense emotional turmoil, however, as Consultant Neonatologist Doctor Patricia Woods explains, it can be quite confronting.
The Neonatal Intensive Care Unit (NICU)
“I think the Neonatal Intensive Care Unit is a terrifying place for families. It’s extremely confronting to walk into, it’s very alien, parents have rarely experienced anything like this before, and we really recognise that struggle that some families might be coping with,”
“Having babies born preterm can be an absolute crisis for many families, something they hadn’t expected or anticipated and sometimes we are meeting them on what could possibly be the worst day of their lives,” says Dr Woods.
Dr Woods explains that in an intensive care environment babies are cared for in their own unique spot, where they have their own incubator and all the support they could possibly need in terms of breathing help, monitoring, infusion pumps, their own neonatal intensive care nurse, and little computers.
“Even that on its own can be daunting when you’re looking at the equipment and incubators and the sound of alarms. It’s the sensory overload that some families might find frightening,”
"You’ll hear a lot of terms that can be quite confusing, however, it’s important to understand that prematurity is a spectrum and babies born along that timeline have very different needs and vulnerabilities," Dr Woods explains.
Dr Woods says it is essential for a woman carrying multiples to understand the risk of prematurity.
“Just equipping yourself with the knowledge and the reality that your babies may well require intensive care, and this journey may well not be as smooth or straightforward as you might imagine,”
“Doctors cannot always predict purely on gestation where your baby might need intensive care most,”
“The default is really coming to the intensive care area so your baby can be assessed properly and be provided whatever support they need in those first few hours and take it from there,” Dr Woods says.
NICU - The first few hours
According to Dr Woods, a baby born, for example, at 28-weeks’ gestation will almost certainly need assistance in breathing, so CPAP is very common.
CPAP is Continuous Positive Airway Pressure that delivers constant air pressure into the nose, which helps the air sacs in your babies’ lungs stay open and helps prevent apneas.
“The skin system is also incredibly important and moisturisers such as coconut oil are wonderful for helping skin integrity and preventing infection,” says Dr Woods.
Dr Woods says from there the focus turns to nutrition.
“Like everything, your baby’s systems are developing and maturing and breast milk is introduced slowly, as it takes a little bit of time for the baby’s gut to wake up and learn to absorb it and tolerate it properly,
“In the meantime, we provide a thing called TPN, which is a balanced nutritional program that has the appropriate amount of protein and sugar for energy, and also some vitamins,” explains Dr Woods.
Research also supports giving caffeine regularly to premature babies to support the respiratory drive for breathing. It’s used to regulate the breathing centres in the brain, so a baby is less likely to take long or dramatic pauses in their breath.
Your New Normal
Ask anyone, and they’ll tell you the Neonatal Intensive Care Unit is a confronting place. It can be stifling with an array of new sounds and smells, and you might even find yourself in a state of utter confusion.
“Parents are often surprised when they come into the intensive care unit and their babies are at the opposite end of the room or in different pods and ask why aren’t they together?”
“Particularly for a reducing of errors and not giving a baby the wrong medicine, a little bit of distance can help,” says Doctor Woods.
Dr Woods also explains that individual care is really important. The focus of care on what the baby needs from NICU is an individual baby-led approach. Each baby is on a different trajectory and they will find their own groove, and curve. It may also be that one baby develops and grows at a different pace, so it can happen where you won’t be taking all two, three, or four babies home on the same day.
Part of a daily NICU routine might include the following care or intervention:
Testing of blood at different times for various reasons.
Preterm infants born less than 32 weeks will have cranial ultrasounds at the bedside as part of their standard care. The ultrasound is completed usually within the first 24-hours of being born, about a week later, and then a month after that.
These include things such as a heel prick blood test. The NICU has pain score charts, which validate how to tell if a baby might be in pain or experiencing discomfort. Simple comfort measures such as swaddling, cuddling, breastfeeding, using oral sucrose with a dummy or a finger have been shown to act on pain receptors in the brain and are used to make the procedures less invasive.
Heart rate and breathing monitoring
A pulse oximetry monitor, which is like a little sticky band, is placed around the baby’s right wrist or on the foot. This picks up the heartbeat and provides a real indication of the oxygen profusion to the tissues. Those are called ‘sats’ or ‘sats monitors’ and are measured continuously.
A little sticker and temperature probe that feeds directly back to the incubator so everything is completely smooth and titrated to what the baby needs.
In the NICU, it can be daunting to see your babies with all the stickers wires, and tubes attached. However, it’s all part of intensive care.
As Doctor Woods explains even with all the medical equipment and procedures, one of the most important things that offers incredible benefits to your babies is ‘kangaroo care’, or skin-to-skin contact. This is where the baby or babies are placed onto the mum or the dad’s bare chest. This has shown to improve the baby’s breathing and they tend to get to go home sooner.
“We observe trends in babies relaxing when they’re in that space,”
“Their heart rates come down, blood pressure can come down, and it is a really unique physiological experience,” says Doctor Woods.
Taking your babies home
When it comes to making plans for taking your babies home, a baby-led approach is taken. A rough guide is to expect this to happen around their due date. However, Dr Woods explains there are several criteria they’ll need to meet before they’re ready to leave the security of the NICU.
The babies need to be feeding well. Feeding can be exhausting for premature babies and it can take up to three weeks for a baby to build up their energy and endurance to be able to have a few feeds in a row. They will use a lot of energy learning to latch, breathe, swallow, and do everything on time. It’s a real maturity part of the brain that leads to that. As a guide, the baby needs to;
be sucking all breast or bottle feeds well for at least 48 hours;
having periods of sleep where they’re waking for feeds, and
be finishing most of their feed.
The babies need to be able to maintain their normal body temperature. They need to be able to do this in normal baby clothes, in a normal cot.
The babies need to be gaining weight. This is the real proof in the pudding. It needs to be obvious that they’re using the energy from the milk for growing, not just keeping warm or burning up all their energy because they are getting tired with their feeding.
Preparing to take your babies home
When your babies are in the NICU, you’ll often have times during the night when you’re worried about a certain aspect of your babies’ care and development. Dr Woods says it’s perfectly normal to pick up the phone at 3 am to check in on your babies. However, when it’s time to leave the safety and support of the NICU a whole new set of anxiety can hit.
“It’s important to talk to people about your concerns or any anxiety that you may have,”
“Don’t bottle things up, reach out and share your concerns and feelings, and know that this is all a normal part of the process,”
“It might be a crisis today, or the worst feeling in the world, or even the worst day of your life but know that there are people in the NICU who can help you through this,” says Dr Woods.
You’ll remember Janelle Snaddon's story from previous episodes, of turning to IVF in an attempt to conceive a baby, and she ended up with quadruplets. Of course, carrying four babies at the one time means they were certain to be born preterm. So, when they arrived at 30-weeks’ gestation Jannelle admits that no preparation could have equipped her for the emotions of seeing her babies in the NICU for the first time.
“So emotional, it’s hard to even describe those feelings,”
“I just remember thinking that’s all I wanted to do, that whole time after having the babies, and a day later not knowing how they were and just having these four photos of them,”
“I just wanted to see them and know how they were doing,” Jannelle says.
Jannelle wasn’t well enough after the birth to see her babies and had to wait until the following day.
“And, of course, having four, they were all spread out over the nursery, it’s not like they’re one, two, three, four,”
“It’s complete and utterly uncontrolled,”
“The one time I couldn’t control anything that was going on in there,” she says.
Jannelle admits the hardest part of her NICU journey was just sitting beside her babies’ cribs, not being able to do anything to help them, and just hope that everything went well.
Sally’s NICU story
If you’ve been listening to this season of Double Happiness Multiplied you’ll remember that my identical girls were born at 28-weeks’ gestation. They spent 64 days in NICU. Those weeks and months were among the most joyous and heartbreaking of my life. Of course, I was extremely happy they were alive but they were so small and with every step forward there seemed to be five steps back.
With each day, there would be another challenge, from chronic lung disease, constant infections requiring antibiotics, spinal taps, blood transfusions, heart complications, and hernias. Our NICU journey was completely and utterly overwhelming.
I felt like a mere bystander peering at my babies through the walls of these plastic houses, jumping at the sound of alarms, and then being calmed by the bubbling and popping of the CPAP machines. The most terrifying part was reaching into the humidicribs and shaking the girls’ tiny bodies to get them breathing again when those machines screeched out for help.
There were times where my chest ached under the pressure and I just wanted to fall to the floor and scream out for help, but my sheer stubbornness to show my strength didn't allow it.
You see, I’m not very good at asking for help, or in fact, accepting it when it’s offered but my advice to you, if this is your reality, for the time being, swallow your pride and ask for support because it is there, you just need to find the courage to ask.
To finish off this episode here is a letter written to NICU mums by blogger Lindsay Franks.
Dear new, NICU mom,
It’s a place you likely didn’t expect- sitting in the NICU, watching your tiny baby fight for its life. It’s a place you wouldn’t choose. And if you’re like me, you had every intention and dream of holding a healthy, plump baby on your chest shortly after delivery. A dream of leaving the hospital, baby in tow. And now, here you sit, watching your fragile baby through a plastic box.
I wish there were magical words that I could write to make this situation better, but I know from experience that there are no words to do that. What I can do is share with you from one NICU mom to another, some words of encouragement.
When our son was born at just 23-weeks’ gestation, we were terrified. We knew babies were born prematurely, but never knew they could be born and survive this premature. We had no idea what we were facing.
You’re likely going to be bombarded with folks who care about you dearly. Folks who want to help you. Folks who want to fix the situation and take away your pain. Occasionally they’ll say things to you that will hit a nerve. They may be under the assumption that your baby is just in the NICU because he/she needs to grow a little more (not knowing the battle your child is in). They may demand you stop grieving and ask you to be glad that your baby is still alive. Some may go as far as to say horrible things to you such as, “At least you didn’t have to go to the end of your pregnancy and be miserable” (True story.)
But the truth is, unless they’ve been there unless they’ve walked this, they won’t know that your heart is broken. They won’t understand that you’d do anything, go through anything if it meant you could just carry your child to term and save them this pain. And they won’t understand that in an instant, your dreams have been shattered and you’re questioning how you’ll ever pick up the pieces, glue them together and start again. You don’t need someone to remind you to be thankful-- you are. It will take some getting used to, but often times you’ll juggle being thankful for your child’s life while being scared to death for their future. That’s ok.
You see, some of us have been there. Some of us are still there. And we want to tell you one thing: all those feelings, those conflicting and sometimes awful feelings, they’re normal. Yep, totally normal. And no, you don’t need to explain them to us. We get them. We’ve had them. We’re still having them.
Plain and simple: the NICU is traumatic. All of the uncertainties, the obstacles your child faces, the pain, the statistics--- it all takes its toll. But you will emerge. You will find a hidden strength that you never knew you had. And you’ll see the strength of your child. You’ll grow amazed and proud of them as you watch them win their battles.
As you navigate these new waters... ...Don’t be afraid to speak up and speak out. Find your voice and share your feelings and concerns.
...Allow yourself the opportunity to correct others who may misjudge your fears of the future as an inability to appreciate the miracle of your child.
...Grieve. Lots of things have been lost along the way- a normal pregnancy, a normal birth, a normal departure from the hospital... the list goes on and on. Grieve it all. You’re experiencing loss, a huge, unimaginable loss.
...Know that you can’t prepare yourself for the future (after all, no one can predict it) and force yourself to stay in the present. Deal with the hurdles of the day.
...But when your mind does start to ask the “what ifs” about the future (and it will), when you start to doubt the path you’re on, don’t beat yourself up for it. Face those “what ifs” with courage and know that the strength you’re discovering will emerge as you face each and every new trial.
...Remember that your child, not statistics will determine his/her course (these stubborn NICU babies rarely follow the predicted path).
...And finally, know that you’re not alone. Some of the most therapeutic times are found in the NICU when moms begin to connect. Share stories with each other. As you begin talking, you’ll likely find that these women who you thought were so different from you, have now become the only ones who understand your heart. Don’t be afraid to talk to them. Chances are, they’ll appreciate knowing that they’re not the only ones feeling this way either.
This journey that you’re on, it’s a battle. It’s likely to take some turns. You’ll make advances and retreats. Sometimes it will feel like you haven’t left the trenches in weeks. But you will emerge. You will make it. The battle will end. And one day, you’ll look back on this time and it will be a blur. A new normal will emerge, you’ll begin to find happiness and good times again and you’ll look on your scars knowing that each one represents something you have conquered.
With Love, A former NICU mom
According to the World Health Organisation:
Every year, an estimated 15 million babies are born preterm (before 37 completed weeks of gestation), and this number is rising.
Common causes of preterm birth include multiple pregnancies, infections, and chronic conditions such as diabetes and high blood pressure; however, often no cause is identified. There could be a genetic influence.
Preterm birth complications are the leading cause of death among children under 5 years of age, responsible for approximately 1 million deaths in 2015).
Three-quarters of these deaths could be prevented with current, cost-effective interventions.
Across 184 countries, the rate of preterm birth ranges from 5% to 18% of babies born.
Coming up on Episode Nine of Double Happiness Multiplied we honour those families who sadly didn’t take one or more of their babies’ home.
Twin mum and Psychologist Dr Gretta Little talks about grief and the importance of reaching out and speaking to others who have experienced the loss of a multiple.
Alexa Bigwarfe shares her story of grief following the loss of one of her twins, due to twin-to-twin transfusion syndrome
Joanne Beedie’s journey is similar to Alexa’s and she guides us through her process for getting on with life after saying goodbye to her baby boy.
Until next time.
I wish you Double Happiness … Multiplied.
Double Happiness Multiplied - What you need to know about having Twins, Triplets, & Quads book: