By Jayne Lewis
*This blog comes with a trigger warning . I’ll never forget the details of the week that led up to our son’s birth. Firstly a midwife noted on the Monday that the size of my bump had gone down by 5cm in a week. She said it was probably nothing to worry about but I should go for an emergency growth scan just to check on things. My husband and I attended for a scan the following morning, the head sonographer was sent for after an initial scan, which showed that the amniotic fluid was all gone and that the placenta had calcified to such a degree that it looked like the kind of placenta seen in intravenous drug users (I have never touched drugs). I was stunned, as my pregnancy had been wonderful and I had no idea there was anything wrong. The movements had changed in how they felt, but not in frequency. I thought it just felt different because he had less room in there now he was getting bigger. It turns out he had been struggling in there for quite some time and was severely growth restricted. My husband and I sat in the waiting area, shell shocked wondering what was going to happen, whilst the staff made phone calls to discuss what should happen next. I was 34+3 weeks pregnant. Phil and I had been married 9 years and this was our first miracle baby, who we really didn’t think could ever be a possibility for us. Whilst we sat there, I thought about God. God had granted us a massive, unexpected, long awaited blessing - I couldn’t wrap my head around the possibility of it being taken away, i knew God wouldn’t allow that - still, I was scared. We were told that i would have to go and see the head consultant, but that I should be prepared for an emergency C-section scenario. I can only describe how I felt by saying I felt stunned and scared, but sure of God in the midst of it. I had wanted a water birth, with candles, soothing music, no drugs except for a tens machine, gas and air…….what happened couldn’t have been further from that experience. The head consultant had been told of our arrival and had gathered about 5 students in the room for this scan, as this was so educational. Not ideal but I just didn’t care at the time. He confirmed what had already been told to us. He said the baby was quite unwell and weak, and wouldn’t survive a labour and normal birth. He said that the placenta was very close to dying completely but that he thought it had a couple of days life in it. He said that I should come back for two days for monitoring and steroid injections to mature his lungs quicker and that if this went to plan I should have an emergency section on the Friday, at exactly 35 weeks. Going home was awful, as I was paranoid all the time about when was the last time I felt him move. On the Friday, we went to the hospital, scared of what was going to happen. I was the last Mam to go for the surgery, and the surgery was awful. He was in a transverse lie position and when he came out, my uterus clamped shut around his head. The placenta totally disintegrated as soon as they cut me open and it took them 20 minutes to free his head - using forceps and tearing me in several directions to get him out. By the time he was fully born he was lifeless, he did not breathe and had no heartbeat. It was horrible not being able to see him or to know what was happening, it was so quiet. The anaesthetist was trying to reassure me by saying, "he just needs a bit of help to breathe", as time went on I started to panic, then I heard a tiny whimper. It had taken 20 mins of cardiac massage and intubation but eventually his heart beat for itself and he breathed. Phil (my husband) was told he could go and have a look if he wanted, he did and came back saying, "he’s gorgeous”. I was not allowed to hold him, he needed to be rushed to the NICU (neonatal intensive care unit), he was basically held in front of my face for no more than 5 seconds so I could kiss his little head before they ran out of the room with him. I could barely see him as he was covered in wires, tubes, and the head harness that holds the breathing tubes in place. One of the most brutal things about that experience for me, was that after he’d been born I was taken back to the bay where I’d been waiting to go up for the surgery. As I had been the last one to go up, all the other Mam’s were in their beds, cuddling their tiny new perfect babies, and I was wheeled in empty handed. I’ll never ever forget how gut wrenchingly cruel that felt, it still does. We didn’t hear anything for what felt like the longest time, we didn’t know if he was even alive. Telling family he’d been born was difficult, as we couldn’t tell them if he was alright, or if he was going to be okay. I was moved to a private room on the maternity ward, which I was so grateful for. Phil had been taken to the NICU to see him whilst the nurses settled me. I didn’t ever ask doctors and nurses if he was going to be ok. I didn’t want to consider the possibility he wouldn’t be, I had to stay positive, i didn’t want to put any negative or fearful energy out there, and God had brought us this far - He would see us through this. Phil came back with a photo the NICU nurses had printed out for me. It was horrible. There was just tubes and head braces and a blue and bruised chest and it just didn’t feel real - I did’t recognise him as ‘mine'. After a while the nurses asked if I wanted to go and see him which of course I did. So they wheeled me on my bed to the NICU. I will never forget the sights, sounds and smells of the NICU. As they wheeled me in to the high dependency area, I noticed the incubators were set out in a horse shoe shape around the outside of the room with the nurses station right in the middle, as they wheeled me in I didn’t know where to look, I didn’t know which baby was mine. I DIDN’T KNOW WHICH BABY WAS MINE. Failure as a mother, number one. They could have wheeled me up to any child and said they were mine and I wouldn’t have known. Most mothers get to hold, see, bond with their babies before they have to go through any kind of separation, so they’d probably recognise them. My husband had to point out to me which was our baby. It was just so weird looking at this tiny 4lb 6oz baby in a box. He was long but he was all bones and loose skin. He was also a peculiar bluey grey colour. I couldn’t really see his face because of the tubes etc He had a CPAP mask over his nose which was helping him to keep breathing, and an NG tube out of his mouth. The bits of his head and upper body I could see were covered in really horrible bruises from the birth. He had to be x-rayed shortly after he was born to check for broken bones, thankfully, he didn’t have any.
The first time I got to hold him, at 9 hours old, I was terrified. He was so floppy and tiny and all the tubes and wires were so heavy on him I thought they might break him. After a few days I got a bit better at holding him and when they talk about that ‘rush of love’ …. my word it’s so powerful it made me dizzy. If you could bottle it and sell it I’d be hooked! The next few weeks were some of the worst of my life, and the hardest in our marriage. Yet they also contained some of the most powerful feelings and surges of love I’ve ever known.
We named our boy Oscar Tobias, as they were names we both loved equally so had to have them both. Oscar had so many problems and set backs. He battled sepsis, severe liver problems, major feeding problems that required him to be starved too many times. So many tests, needles, PICC lines, scans, medications and surgical procedures that I lost count. He was in NICU for just shy of a month and battled hard every single day, we’d have a step forward and 5 steps back. He really is a warrior, he was so weak and small and kept loosing weight yet he still fought, with God and his mammy and daddy fighting with him. Phil was taking unpaid time off work to look after things at home and juggling coming to the hospital too, I had to express 2 hourly, day and night when my insides were quite literally torn apart and I was battling mastitis. It was a full on time for us all. One of, if not THE, lowest most awful parts of this was that after 6 days, I was told I had to go home. This was (and still is) inconceivably unnatural/wrong/inhumane. How can a mother leave her new defenceless critically ill baby? I cry right now as I write this. To walk away from him, knowing I was going home and he wasn’t going to have me until the next day, was torture. He needed me there! I needed to be there! The NICU nurses are wonderful, but if they are very busy they can’t just cuddle your baby if they are crying. It was hideous, and comments from people who said ‘well at least you can sleep’……. WHAT?? No, you can’t. You are desperate to be with your critically ill baby, and you’re having to get up to pump breast milk through painful mastitis every 2 hours through the cold dark night, alone. There is no rest in this scenario. I have never felt more alone in my life than I felt in some of these moments. Oscar endured a lot, and we suffered with him, but very slowly he got better. He was discharged from NICU on my 38th birthday, almost a month after he was born. This was wonderful, but it was a huge mistake as some of his test results hadn’t come back yet and they were bad. He got very sick and was readmitted to hospital on his due date, just 6 days later. He was very poorly and spent the next few weeks back and forth from home to hospital. He had multiple admissions in our local hospital, surgery in Southampton hospital, and multiple trips to Kings hospital in London. He has endured so much. He bares the scars, but I’m sure he won’t remember any of it, and we love him so fiercely to make up for the time we had to be away from him in hospital. For me the scars are still deep and real in terms of emotional health, I am battling PTSD. The memories of that place, and that time, will always be special, because its the story of the beginning of our first child’s life, and the staff there were beyond amazing. Yet, these are also the most difficult memories to live with, process, and some days, be haunted by. It can be a smell, that takes me back to an occasion where I had to hold him down so they could get blood from him, while he screamed so much that he eventually dissociated and went limp, silent and blank. Or a sound that reminds you of the the buzzer sound from the NICU door, that you had to stand behind and wait to be let in to see your baby after you took a 20 second bathroom break, and you can hear your sick baby screaming - but you can’t get to him and you have to wait forever for someone to buzz you in. Or when your friends talk about their birth experience, which of course they should, and you feel gutted that you can’t relate even a little to their experience. Or if they are complaining about something which is significant and real to them, and you wish your issues had only been that simple. It makes everything awkward as I’m always worried I’m coming off weird or cold towards people, but I just don’t wanna join in the conversation and unload all my experience on people, as though it’s a ‘who had it worst’ contest, that just makes everyone feel awkward. Instead, I just try to say nothing. There are times I want to cry hysterically, or scream and shout. Or I just feel awful that I’m trapped in a PTSD storm, when people are sharing great news and I can’t celebrate with them, or even hold a proper conversation. Then I stress about what they’ll think, and if I should try to explain - but then who has time (or who even cares?) to listen to my heart break over the horrible experiences we had. Who wants to hear that I feel robbed of those first few weeks of blissful exhausted time with a newborn at home. Milestone moments were stolen from us, I didn’t change his first nappy, I didn’t give him his first feed, I wasn’t the first to hold him, I wasn’t the first to dress him, I wasn’t the first to lay him in a pram. My ability and opportunity to ‘be a mother’ was hugely undermined from the word ‘go’. I am angry about these things, and have felt so alone with my feelings about it all. However, I feel that saying all this out loud to people will be seen as attention seeking, and I’m very aware that compared to some, we have had it easy and are so blessed. Our son is alive, and now he is well. I have had counselling, which has helped, but eight NHS sessions is not enough. It’s an ongoing battle and some days are fine, others are not. Writing this blog has been very cathartic, but even as I type I’m thinking, ‘you’re gonna depress everyone who reads this, what’s the point?’ The point is, our story needs to be told, I NEED to tell it and honestly, this story isn’t that uncommon. There are babies in your local NICU right now and there are NICU parents who bare so many emotional battle scars. If you’re trying to support a friend going through an experience like this, please, PLEASE never start a sentence with the words, ‘ at least…..’ or, ‘if you think it’s bad for you, think about….’ just don’t. Just be. Ask what they need, and if you can - give it. No unsolicited advice, no words are even needed. Being assured of people’s prayers, and just the occasional text message, meant an awful lot to us. Oscar is now 2 years old, and has been completely discharged from all hospital monitoring in the past few months. He is sunshine, he is fun, he is perfect, and he is completely unaffected by the start he had. With the amount of time he was lifeless at birth, he should now have real problems but by the grace of God and the skill of the amazing medical professionals - he doesn’t. He is my heart. I cannot describe the depth of love I have for him, or the immense gratitude I have towards God and the wonderful hospital staff who saved his life repeatedly. He is now a typical whirlwind 2 year old who loves his family. He is signed up to a modelling agency, and is also a brand rep for a couple of small handmade businesses including the fabulous Freddie fox & co. As soon as I saw their clothes I had to get some for Oscar, because they are unique, eye-catching and bright, just like my miracle, warrior little sunbeam.
Yes, the start was more tough than I can convey here, but faith, hope, and love brought us through. We are the blessed ones.