A NICU Twin Dad’s Story & Advice
Today we hear from Jack, a NICU Dad who openly shares about his journey with his twins Remy and Luca.
He talks about his experience of becoming a Father to twins in the NICU whilst also having another child at home.
Jack helpfully shares his advice on what helped him through his neonatal experience.
Our story
Our story begins last August, we were just over 32 weeks through our pregnancy and our expected twins were what as known as Monochorionic-diamniotic or MCDA twins, the product of a single fertilised egg, resulting in genetically identical babies. MCDA twins share a single placenta but have separate amniotic sacs. MCDA twins are fairly rare, at a rate of three to four in 1,000 births, and can have a number of problems during pregnancy so we were considered "high risk." Every couple of weeks, we would pop into Lister Hospital to have the boys measured (head circumference and thigh bone) as well as check the Doppler Scan, measuring the blood flow from the placenta through the umbilical cord to the babies - basically, testing the placenta's efficiency. Our first born, Ruben (almost 2 at the time), had been born during lockdown in 2020, so I had not been able to attend his scans (apart from listening via the phone), however for these boys, I cannot describe the scans more than just being mentally draining. In my mind, I had pictured these moments as being quite wholesome, full of laughter, maybe a joke about "Twin 1 doing a dance" and "sitting on top of his brother", but these bi-weekly scans were quite solemn and serious, conducted in almost silence apart from the sounds of the equipment. The tension was quite traumatic with the possible issues that could lie ahead.
The twins were always measung on the small side due to the placenta supporting both, but at 26 weeks we found that the boys' growth trajectory had started to flatten. We were now to have weekly monitoring - it was best to keep them in as long as possible, but the doctors had to make sure their growth didn't start to falter. Basically, they were looking for the moment it became safer for them to come out vs staying in. As identical twins, we had been advised that 36 weeks was the latest they could be delivered, but it now seemed that even that would be too far to reach. Each week was a battle to hear the words, "we shall see you next week". On week 32, we didn't hear those assurances. The sound of the Doppler still sticks with me now as the numbers were checked and re-checked before being informed that "they needed to come out in the next few hours". You can try and mentally prepare for those moments, but when it happens, its a bit like a dizzying out-of-body experience as you try to grapple with reality. We had expected at least a few days notice. Jen, my wife, wouldn't even be able to even go home first, no hospital bag with her, not able to explain why she wouldn't be home to put our eldest to bed. Everything was thrown into disarray. Desperate calls to parents were made to sort logistics as Jen donned a surgical gown and was put onto a magnesium sulfate drip.
The birth
The morning itself went at an extreme pace, the panic slowly subsided with the reassurance of the midwives and doctors and we caught up and digested what was happening. Ru was picked up by his grandparents (racing over from a 3 hour drive) and we settled in for what was going to be a long wait for the operating theatre. 5pm came and went, as babies with even higher risk went to be delivered and after a couple of abandoned attempts, at 3am it was our turn. The staff at the Lister were complete professionals. The operating theatre was so calm, so ambient in comparison to the chaos in the hours prior. The team put us at complete ease. Twin 1 was going to come first, slowly and calmly he arrived, kicking his tiny little legs with all the energy he could muster. "He's a wriggler!" grinned the midwife. Within 3 minutes, Twin 2 had arrived to a raucous roar of crying. We had our two names lined up for several weeks now, not knowing which name to give to each baby, but from that point it became clear, we had "Remy Wriggler" and "Loud Luca", both born at 3lbs.
We had prepared ourselves for the prospect of a NICU stay. One piece of advice that my wife passes on to expecting twin / preterm parents is to familiarise yourself with the unit, having a cup of tea with some of the staff and having a guided tour around. We had done just that, knowing that they were always likely to stay for a while. Prior to expecting twins, I knew nothing about NICU, let alone that 95,000 babies end up there every year (1 in 7 babies born will have a NICU stay). A visit there is much more common than you may think. According to a survey conducted by Bliss, a UK-based charity for premature and sick babies, only 15% of respondents felt they had a good understanding of what a NICU was and what it does. The same survey found that 60% of respondents had never heard of a NICU before, and only 25% knew that NICUs care for premature and sick babies. 62% of babies that are looked after in NICU are full term, with most staying for 7 days on average. This doesn't give the average Joe parent a good starting point if you were to end up there.
The impact of NICU on our mental health
Fortunately or unfortunately, we had come prepared. Our babies were lucky not to need much intervention, but they needed to grow a fair amount before they could come home. What you will never be prepared for is to say goodbye to your babies each night, leaving them with people you dont really know, having to go home and seeing their little cots all set up, but knowing how lucky you are that they are alive. There is a bit of guilt here that is hard to put into words. You are so relieved, grateful, thankful that your children have been born safely unlike so many others that pass through the NICU doors, but why is it unfair that they are not able to come home with us? At home, Jen's alarm would go off every three hours, scrambling together the breastpump as she would sit and express milk for babies that were not there. It was heartbreaking to see, madly we were craving the hungry newborn cries in the middle of the night! Any NICU stay is hard, no matter the duration. Around 2 in 5 (40%) parents suffer from anxiety or post-traumatic stress when their newborn baby needs intensive care (neonatal care). Research found that a year after the birth, 1 in 4 (25%) were still suffering. The effects of a NICU stay on parents can last a little while and this is a really important factor to grasp, especially if you are reading this as family or friends of someone going through this experience, it doesnt just go when you pass back through the doors with your babies. Quite honestly, I still find myself in tears quite a lot, despite being a year later when there are certain songs on the radio that take me back to this time, talking to friends about it or even references to NICU on the TV and radio, something I really didn't expect all those months ago. I am clearly still holding a lot of baggage relating to it and it does still weigh heavy, despite the boys doing well. The image of my tiny boys, no bigger than my hand, in an incubator, tied up in so many wires, will always hurt. I doubt that pain will ever really go away, and I still think about it a lot.
Advice for NICU parents
Reading others’ stories
In terms of advice, there were a few things that helped me on the NICU journey. Firstly, absorbing as many NICU stories that I possibly could really reduced my anxiety. Instagram - it sounds a bit crazy as social media gets a bad rep, but I followed 20-30 different accounts, focused on NICU, twins, or preemies. Filling my feed with parents in a similar situation really normalised things, it showed that their baby's lives are not dictated or defined by a start at NICU and nor should yours be. I would also sincerely advise not to go into a Google hole. Don't read medical journals, don't go searching for possible conditions your baby could/might develop. I did this and quite frankly what I read just wound me up and was not actually applicable or relevant to our situation. If you have questions, don't try to answer them yourself - speak to a medical professional, that's what they are there for!
Communication
Make sure you are communicating with the medical teams - maintaining open and regular communication with the NICU staff really put myself and Jen at ease, and being able to be involved in our twin's day to day care really helped with the bonding experience. It also really educated us in the NICU medical procedures and the babies' conditions and that knowledge felt like an element of control, something that you are all too aware is lacking in the entire NICU experience.
Self care
The next piece of advice, take care of yourself and your partner. It is easy to forget to eat, rest, stay hydrated, it's so important that both of you are physically and emotionally well to support your baby. In some ways, it was doubly important for me to focus on Jen and our elderst Ru, especially as her mind was so set on getting the babies better and home. Mothers are incredible humans, they will always put their kids first, so make sure you are there for them. Remain optimistic, but realistic. I could be a complete pain with my outward optimism, but in the really low periods, I stand by it, even if I was crumbling inside. As the partner, it is important to try and remain strong when you can. Hope for the best, but remain aware that setbacks can happen.
Work balance
Work is something that needs to be finely balanced too. I continued to work through this period, saving my paternity leave for when the babies came home and when I needed to be fully hands on at home. This was tough, at the time, there was no additional support in terms of statutory paid leave for NICU parents, however in the latest budget, it was announced that mothers and fathers would be able to claim statutory paid leave for every week their child is in neonatal care, for a period of up to twelve weeks, which will be a massive relief. Jen had to start her maternity leave a month and a half early to care for the boys, meaning she technically is now going back to work 7 weeks early, time that feels a little stolen from us.
Dads’ mental health
Take care of yourself. I was really bad at this myself - when stressed, I stop eating and drinking which along with sleep deprivation, can be quite self-destructive. A Stanford study found that although none of the fathers in an experimental sample group experienced acute stress symptoms while their child was in the NICU, they actually had higher rates of post-traumatic stress than the mothers when they were followed up later. At four months, 33% of fathers had PTSD in comparison to the mothers at 9%. The effects from NICU can develop much later in men. This could be down to society expecting men to put on a brave face, but then feeling 'allowed' to fall apart when the immediate problems have resolved. Try to be very wary of this, make sure you are talking to your partner or a friend about how you feel, as it can be a big burden to shoulder by yourself. If you are reading this as a mother, do check in with the father regularly. My wife also thinks that NICU staff tend to default to the mum being the one to hold and care for the baby/ies so make sure you make it known that you want to be an equal part (wherever possible) of caregiving - it is obviously very scary when you first hold or change the nappy of a very small baby, but they're incredibly robust and it only gets easier with practice!
Support
Seeking support from friends and family is so important at this time. Even if it's some food dropped off, or a friendly cuppa, it is all worth it. Personally, I felt that I couldn't talk to anyone outside of Jen on my experiences in NICU, this is one of the reasons for writing this article, because I felt like it was not something non-NICU parents would necessarily understand. I found myself triggered by a lot of comments, comments about how 'small' and "tiny" they were, or stupid comments such as "at least you can get some sleep". I resented those that did not check in to see how the boys or Jen were, some of my best friends, despite them perhaps not knowing what to say. I shut myself away from friends as a result, which I dont think is necessarily the right course of action. It is important to stay grounded, and try to remain objective on some of these comments, as nobody really means any harm. Just do your best not to let it get to you and let them in. This is one of the reasons NICU awareness month means so much to me.
Patience
The next key is patience. NICU stays can be lengthy, its good to be prepared for a long stay as progress can be slow, but at the same time, be sure to celebrate all the milestones, however small. We did just that, when we got to change their nappies for the first time, when the jaundice light came off, the first cuddle, the first time they were in the same cot together, the first breast feed, whatever it may be, make sure to celebrate it! As a dad, especially as a first time father, do make sure you try to bond with your little one. Spend time with your babies in the NICU, even if its just holding their hands. Have little chats with them, familiarise them with your voice and of course, skin-to-skin is so beneficial for both of you.
Routine
It is always good to try and establish a routine when at NICU too. Balancing time with the rest of the family, work or whatever it can be will feel tiresome. Trying to keep that balance can also lead to increased levels of guilt of not being there with them. Establishing a routine allows you to plan for this, and also can help you feel more in control.
Rooming in
Rooming in - if there is the option to do this, I would thoroughly recommend it. Your first night can be a daunting experience, especially with twins or your first newborn, so doing it under the watchful eye of a midwife or doctor can be a very useful exercise.
Managing having another sibling at home
Trying to get the balance right between spending time with Ru and the twins was something we were very wary of. As a soon-to-be two year old, it was very difficult for Ru to comprehend not only that he now had two new brothers but also that they 'lived in the hospital' (his words not ours). We chose to keep Ru away for the first few weeks whilst the twins graduated from the incubators and brought him in to meet Remy and Luca when they were "wireless", just in case any images could be upsetting. The moment they met was one of the most beautiful I think I will ever experience in my life. We made sure the weeks when the twins were in hospital we kept Ru very busy with lots of days out, but also trying to keep an element of normality in his life. It was very rare that myself and Jen were both in NICU together, we took it in shifts so that there was always one of us available for Ru.
Home
Remy and Luca came home after a month at the Lister NICU at Stevenage. The staff there were quite simply incredible. They were caring, understanding, informative, gentle and really took good care of our little lads. The Lucy Letby case is something that is difficult for most NICU parents to stomach, I cannot imagine the pain and the suffering those poor babies and parents went through. The damage that this has caused to the trust between parents and NICU staff will take possibly decades to mend, and for me personally, this is quite devastating. These people kept our children alive, and cleaned, fed, and supported our children through the hardest, most vulnerable period of their lives and for that, I will be eternally grateful.
Where we are now
From the 0.3% percentile, the boys have since grown to almost the 30th now in just a year (despite a couple of hospital stays for bronchiolitis) - they are the smiliest happiest bouncing lads, and along with our Ruben, really complete our little family. The NICU journey will always stay with us, but it is important to remember, every NICU journey is unique. Its normal to have an array of emotions, before, during and after your stay, but these babies are brave and wonderful.
Thank you so much for sharing your story Jack, connect with Jack at @jackenoble
