‘My babies came out and died – they had to be resuscitated’: Mum

UAE-based British expat Megan Hewitt Dean knew her pregnancy was high risk – it is labelled so in the case of multiples and she was having twins. “We always said 34 weeks [of gestation] and any day after that will be a blessing. So I was expecting [labour at] 35 weeks, maybe a few days in newborn intensive care unit (NICU) but then just to be discharged to go home,” she recalls. And so when they said her cervix had started to shorten at 24 weeks and she was put on bedrest, she took it seriously but wasn’t too concerned. Three weeks on, she was in active labour. “I was moved into the hospital,” she says, recounting what happened that day.

“I spent the whole day in a lot of pain, but I was obviously in a lot of denial, because [I thought] there’s no way I can be in labour now, I still have three months to go. Twin pregnancy is tough – lots of random Braxton Hicks contractions [false contractions], hands everywhere, it’s quite a lot to carry through. So I just thought maybe just having a bad day with the pregnancy and then I called the medical board and I just said, ‘well, I’ve been feeling like this all day’ and they said, ‘well, just come in, just for a chat’. We went in, obviously didn’t pack any sort of hospital bag at all, assuming that I’ll be discharged immediately – they’ll just check the heartbeat, everything is good, and then we could go home. They checked and said, ‘actually, you are three centimetres dilated’. We need to make this labour last as long as possible.”

What is a pre-term birth and why is it so dangerous?

The World Health Organisation (WHO) defines a preterm birth as one where the baby is born alive before 37 weeks of pregnancy are completed. A full-term baby is born at 40 weeks. Every year, says WHO, about 15 million babies are born pre-term. And every year, about one million children under five die because of pre-term complications.

The 31-year-old was given medication to delay birth, a steroid to help develop the babies’ lungs and a magnesium drip to build the brains. And she was told to make notes of every contraction. “They gave me paracetamol, but no pain medication. I had to feel every single contraction, I had to write it down – the strength of it. I had to be aware of the pain I was under because the more they check my cervix size, the more it starts to dilate, so they had to clinically asses me rather than check – because checking speeds labour up.”

Five days of contractions

Five days into labour, the doctors said it was time – “They said, ‘we need to take you in for emergency C-section, they are coming out now’,” she said.

“The babies came out and both of them died – they needed resuscitating,” she says. After a bout of silence, there was a sudden small cry, she says: “That was the best thing ever.” And then, they got taken away.

Baby in incubator — The newborns – Teddy and Winnie – were tiny; Teddy weighed 825g and Winnie 1.15kg. The first month was just about stabalising them and making sure they survived Image Credit: Supplied

“I was in hospital for 10 days total, so I got to stay in hospital for five days after the C-section. A lot of realisation happened in that moment; you very quickly realise that your baby is the sickest one in the NICU and they constantly die, essentially – they constantly stop breathing or their heart stops beating; you are dealing with constant resuscitations. Obviously, I did a bit of Googling when I was in labour, but nothing prepares you for that because it’s really, really intense and so much stuff is happening… it’s a world that you just didn’t know about before….”

The newborns – Teddy and Winnie – were tiny; Teddy weighed 825g and Winnie 1.15kg. The first month was just about stabalising them and making sure they survived. “My little girl wasn’t doing so well, but she was surviving. But Teddy, we really didn’t think he was going to pull through for a long time,” says Hewitt Dean. “The first month, it’s just horrible.”

Going back to work

“At the time, it was just auto-pilot. I had to go back to work five days after giving birth … my babies were in hospital for 67 days, so I had to postpone my maternity leave because I wanted to hopefully have babies that were coming home and I wanted to have my maternity leave when they were home and the only choice to do that was to go back to work straight away. So again, there’s a lot of coping – you’ve got lots of stuff coming in every direction – I just got on with it and I just kept looking for any sort of positivity.

Dan with one of the twins Image Credit: Supplied

“When Teddy was really, really sick and we thought he really wasn’t going to make it, for example: he didn’t move for about a week apart from his chest and that wasn’t even him breathing, it was the breathing machine breathing for him and all of a sudden he moved one finger… something like that … that’s how you cope – you just look for the small things that make you think, okay, we are going to get out of here.”

At one point Teddy got sepsis – or blood poisoning – and it was touch and go. “Teddy spent longer in hospital. Winnie, our daughter, came home on day 50. So we had spent 17 days juggling both; one premature baby at home, which is really difficult because she only learnt how to eat a week ago, you know, because they can’t sallow, suck and breathe at the same time. And because of that, drinking one bottle can take up to an hour. Pre-mature babies are prone to really bad colic and really bad reflux to the point you need medication for it. So we were dealing with that with Winnie and then also with Teddy, who was still struggling – he was on breathing support when Winnie came home. And we were working still – so the coming home was in stages for us,” she says.

The guilt is real

Mum guilt is on steroids for the mother of a pre-term newborn. “Infection control in NCIU is so so so highly controlled, because of that we are so terrified to see anyone or do anything. You also feel the guilt of spending any time that’s not at your desk or sitting next to the incubator. Even just dinner – you feel so guilty that you are not there. So it’s a really isolating experience and obviously no one really gets it and they stop asking as well. Having a baby can be quite lonely anyway but having a NICU baby is very very lonely experience and having support makes such a difference. My support network was incredible and I know I wouldn’t have been able to get there without them, and I know some mums who didn’t have the support network and they struggled to a point where they questioned their lives,” says Megan Hewitt Dean.

Getting therapy

One month into the NICU routine, when she was allowed to hold the babies – they were stable enough by this time - she had an overwhelming urge to run. “I thought I was doing okay and then when I was allowed to hold the babies, I started to get overwhelming feelings to run away with them, which I know is not normal and really dangerous actually. The feeling was overwhelming – just take them, rip their wires out, rip their breathing tubes out, take them home. The feelings were really real and quite scary and I had to physically hold myself back and that’s when I thought okay, ‘you need to go get some help because you can’t be like this when they are at home, when they are under your care and you are fully responsible for them’. I was diagnosed with post-traumatic stress disorder and high functioning anxiety,” she explains.

Parents of preemies more susceptible to PTSD?

It’s a constant rollercoaster for parents of pre-term babies; it’s a high pressure period where blink-and-you’ll-miss-it moments keep them in a state of constant anxiety; post-traumatic stress disorder seems only too real. Dr Waleed Ahmed, Consultant Psychiatrist at Priory Wellbeing Centre Abu Dhabi, explains: “Studies have reported post-traumatic stress symptoms (PTSS) and less so diagnosable PTSD in parents of babies who were born very pre-mature (less than 32 weeks gestation) or of very low birth weight (VLBW – less than 1.5kg). Risk factors can be thought of as associated with the various phases of the birth process – during, before and after. To confront with an obviously fragile and vulnerable baby with potentially life-threatening and long-lasting medical condition is extremely stressful. Often there can be birth complications in the mother that can heighten the traumatic experience.”

Getting physical help

Fortunately, Hewitt Dean had reinforcements. She says that as soon as she went into labour her mum got a flight out. “So my mum was there basically being our nanny; she made sure that we ate, that I was pumping milk, and making our bed. She did everything – because honestly, all we could manage was the hospital and our work and everything else just fell to the side and she just picked it up for us,” she explains.

When Teddy came home, she says, “It was great for two weeks. Teddy came home two days before Mother’s Day. Dan [baby’s father] had his paternity leave and we just enjoyed time as a family but unfortunately, we were readmitted two weeks later to NICU, because he needed emergency surgery because he had a bilateral hernia.”

What is a bilateral hernia?

A bilateral inguinal hernia is the presence of two inguinal hernias on both sides of the pubic bone. An inguinal hernia is a bulging of the contents of the abdomen through a weak area in the lower abdominal wall, explains US Department of Health and Human Services on its website.

“When we were readmitted, I think it was only for about a week, so he did quite well in recovering from that but he was so small going into surgery, he was smaller than a full-term newborn baby - I think he was 2.5kg going into surgery … he didn’t fit into his gown, it was like a bedsheet on him. And the cot was absolutely massive. It was a big reminder that prematurity doesn’t end when you graduate – they are just at risk of so many things.”

The after-effects

Plus, preemies grow and develop at a different rate than full-term kids. Pre-term babies have an actual age and a corrected age, explains Hewitt Dean. “The actual age is how old they actually are – 11 months. But their corrected age is if they were born full term what would their age be. So their corrected age is eight months.”

“So when it comes to milestones we go to corrected age not actual age. A lot of doctors and physio and occupational therapists have told us don’t put too much pressure on yourself because they are going to be delayed but it doesn’t mean they are going to have disabilities – it just means they are going to be delayed. They say for every month premature, the baby needs a year to catch up. So by about three our babies will be like full-term babies.”

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Going through such a tough time takes its toll on couples who can either grow closer or fall apart. For Hewitt Dean’s family, it was a solidifying moment. “We’ve been together for 10 years and our relationship was on really solid ground before I even got pregnant. I saw a lot of relationships break down in NICU, and I feel really fortunate that Dan and I are best friends first – we were really each other’s rocks and that made things a lot easier – it made things much better,” she says.

And they decided to pass on not the trauma of the initial days to the twins, but a sense of amazement and wonder. “We were really tired, but then we just turned to each other and said, this is incredible, I can’t believe how strong they are. And we celebrate that. Every month, we celebrate their birthday and take them to bucket list trips, we’ve flown with them – we’ve just decided that we are just going to live life after seeing that they were not going to have a life, we’ve just decided to show them everything we could safely outside the incubator.”