Baby Loss Awareness Week 2020 - Tobias' Story

BLAW 2020 - Tobias' Story

As told by his mummy Lucy

There is nothing that can quite prepare you for losing a child, or leaving the hospital with a box with the few precious things your baby had or used in the days he was here.

Our story begins in February/March 2017, when my waters suddenly broke at 23 weeks and 5 days. I should add also that this pregnancy, very unlike my first, had been a nightmare from the get go. I had been suffering with bleeding and infections from around 6 weeks so I was already feeling anxious and was terrified the entire way through.

Being my second pregnancy, I knew the feeling of my waters breaking - though I was in disbelief and initially thought I'd probably pee'd myself – It was around 11pm on the 28^th February, and after already being at maternity assessment earlier that night for yet another bleed and yet another infection, we had come home and I'd gone to bed. I woke up suddenly and everything just felt wet. After a few minutes of gathering my thoughts, arguing with myself that 'it can't be my waters... not so soon surely?!' and realising what was actually happening, I called my partner and managed to phone the maternity assessment unit in my state of blind panic.

We got to the hospital and they confirmed my waters had indeed broken, I was put on antibiotics and given a first round of steroids to help mature his lungs. It was then decided we would be blue lighted to the nearest level 3 NICU which was Leeds general Infirmary.

I think we got to LGI at around 4.30am on 1^st March and my partner wasn't far behind after following the ambulance to the hospital. The next 24 hours or so are a little blurry but I know I had my second steroid shot, blood tests to check for infection, we had meetings with various consultants, neonatal doctors and a scan to estimate Tobias' weight and check that everything looked okay despite lack of fluid around him. We watched other families come and go off the antenatal ward, ladies in early labour get taken off to labour ward, new mothers with their newborn babies. All these things we were terrified we would never get to experience, because we knew the risks and statistics on having a baby at such an early gestation.

Friday 3^rd March arrived and I'd noticed when I woke up my stomach felt very bruised and sore and I felt quite crampy. I'd mentioned it to the nurse when I was having (what felt like) the millionth blood draw. She advised me my uterus was probably just a little irritable, gave me some paracetamol and just said to keep an eye on things. By the time lunch had been and gone, these cramps had turned into more regular pains that were coming and going... every 10 minutes then every 7, then 5 and so on. The doctors were called, and after some conversations about the risks of examining me they agreed to check. Much to my surprise, nothing was happening, I wasn't dilating but I had started bleeding a little again. They agreed that if the pain was becoming too much that they would transfer me around to the labour ward so I could have something stronger to ease the pain so I could rest, and that's what they did. I think this was at around 4.30pm. They checked me over, monitored me and then gave me some diamorphine which allowed me to fall in and out of sleep for an hour or so.

At around 6.30pm I woke with the unbelievable urge to push, the doctor came in and examined me... and then suddenly the room was full. Doctors, midwives, the neonatal crash team were called, all these people for one tiny baby. I was given magnesium sulfate (for brain protection for baby) through a drip in my arm, which felt like fire coursing through my veins. It was just awful. It took a lot of pushing and around an hour and a half later, Tobias was born at 8.46pm at exactly 24 weeks. He weighed a tiny 600g or 1lb 5oz. He, of course, was whisked away to the NICU and was under the care of the most amazing bunch of doctors and nurses during his stay. Our beautiful boy fought extremely hard to be here, he was completely exceeding expectations and was requiring very little oxygen through the ventilator, taking on feeds very well, his infection markers were coming down and by day 5 he was showing no signs of infection at all. We finally had some hope that maybe, just maybe, things would be okay and we might actually get to bring our boy home. The next day, we noticed that Tobias wasn't tolerating his feeds quite as well and that his tummy had become rather swollen and dark in colour. He was x rayed, blood was taken and the surgeons were called. They weren't sure what exactly was going on, but wanted to do exploratory surgery as they feared it may be a perforation in his intestines caused by a bacterial infection. We agreed and when he was a week old, they took him to the theatre and found his bowel had perforated and was leaking poo into his tummy. They managed to repair his bowel and clean everything out, the surgeons even seemed quite optimistic coming out of it, saying he handled the surgery like a champ.

12 hours after surgery, our boy took a turn for the worse, and went into cardiac arrest. The doctors did manage to bring him back, and had him on full support for hours after in order to try and get him through but his kidneys, liver and heart were failing. He just couldn't keep going. We made the heartbreaking decision to take him off life support. The nurse took us into Louis' Suite on the unit and brought our baby into us. We spent hours with him that day, experiencing our first cuddles, exploring every inch of his face, holding his tiny hands. The nurse helped us bathe him and dress him, we got to make impressions of his hands and feet in clay and took some photos, we even got a little lock of his hair to keep. It was heartbreaking to have to walk out of that hospital with just a box and to leave our baby behind.

He was brought back closer to home a few days later and we visited him at the funeral home every day, let family come and say goodbye, introduced him to my best friend and got to tuck him into his forever bed the morning of his funeral. That was definitely the hardest day of my life. Even now 3 years on it is still hard. There isn't a day that goes by that we don't miss him, that there doesn't feel to be a piece missing from our family. He was only here for such a short time but he is in our hearts forever.

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Just a Box