Helping Lumen

Hello to everyone that has taken the time to read our story and help us at this time of need.

My name is Gaby and my husband Craig and I are parents to Lumen our 3 and 1/2-year-old son and the youngest of our 4 boys. Lumen was born on the 24th of March 2019, the birth of your child is meant to be one of the happiest days of your life, but unfortunately for us, it was the worst day and would be the start of our parenting journey going down a totally different route that we’d never imagined. Well, a route no parent imagines as they don’t write a chapter in parenting books about what happens if your baby is born with medical needs straight away and may have to go to the NICU (Neonatal intensive care unit).

As Lumen was my fourth child, I pretty much knew what my pregnancies felt like and had my own intuition if I felt something was a bit off. In the past with my others, if I hadn’t felt them move for a bit, I’d eat something or drink a can of coke, which would usually get them raving it up in my womb again.

Lumen's pregnancy was totally different. Before he was born, I had visited the maternity ward 3 times with reduced movements. Each time I was told to go home and lay down on my left side and rest (which with 3 other children is like asking a Hamster to round up a herd of sheep). I had also been measuring 5 weeks behind when I would go to my routine midwife appointment, but it was brushed off as me having smaller bumps in the past so was probably fine. I was sent for an ultrasound to see his measurements and was told he would just be a small baby by a sonographer in training. There was no mention of checking the health of the placenta, so we assume it was not checked.

The day before he was born I hadn’t felt him move for 24 hours. At 4am I rang the hospital to say I was coming in, once I was in there they started putting a cannula in me before telling me anything about what was happening. They then scanned me again and realised that the placenta had stopped working and Lumen was extremely unwell and I needed an emergency c-section straight away.

When they got him out, they lifted down the curtain to show me my baby, they had positioned him on the surgeon’s hand as if he was sleeping as he was unresponsive, grey and silent. I have that image ingrained in my brain and it haunts me every day.

My mum who was my birth partner could see the nurses trying to get him to breathe, I couldn’t see anything but it was when my mum suddenly said “oh please cry” that I realised how bad the situation was. He didn’t cry, he couldn’t breathe on his own and they took him straight into the NICU.

I was taken into the recovery room and wasn’t told any information that was happening. My mum rang my husband and tried to explain the situation as best she could with the tiny amount of information we had been given. While I was lying in the bed, I felt like an empty shell, that I couldn’t quite understand how only 2 hours before he had been in my womb and I had a bump.

A couple of hours after his birth we were given an update. The consultant paediatrician came to tell us they were transferring Lumen to St Michael's hospital in Bristol, which has a specialist NICU and cover's the whole South West of England for babies that are extremely unwell. He informed us that if i'd left it an hour later to come in, Lumen would've been born stillborn, but we had to realise we weren't out of the water yet and Lumen was extremely ill and most cases he had seen with a baby born this unwell, did not make it. So we were on an hour by hour basis on him surviving.

We were taken to the NICU to say goodbye to Lumen before he was transferred to Bristol, it also was a possible forever goodbye as i was unable to be transferred with him, so we were separated for the night. The total alien feeling of being in a maternity unit with all these other women who have their babies and are so happy, while I was miles away from mine, not knowing if he was even still with us.

The next few weeks were just emotional hell. If you have ever had to go to a specialised NICU, there is no way to mentally prepare yourself for what you're going to experience, my only descprition of it is that it is the saddest place in the world. With rooms of 16 newborn babies that are all silent and all you can hear are machines, its the weirdest yet most heartbreaking place to know your tiny baby is one of them.

After 3 weeks of highs and unbearable lows, Lumen was transferred back to the Bath NICU with the diagnosis of HIE (Hypoxic Ischemic Encephalopathy), which is brain damage that has been caused from the lack of oxygen and blood flow to the brain during pregnancy and birth. Lumens was caused by his placenta not working and if it had been dealt with earlier, then he wouldn't have been in the condition he was at birth.

Lumen spent 3 weeks in the Bath NICU and was discharged with a whole plan of his care set in place. Initially Lumen was doing well and was smiling, laughing and would even clap. Sadly around the age of 8 months, Lumen extremely regressed, he stopped smiling and laughing, would not give you eye contact and no longer reacted to the comfort given by me. He was a completely different child and I was telling the doctors that it was like someone had swapped my baby. Unfortunately, this baffled his doctors as he had been doing well before, but we have had to accept it as part of his diagnosis and I live with the worry it could happen again at some point.

Recently Lumen has been assessed as having the mental age of a 16-18-month-old but in a 3 1/2-year-old body. He doesn't recognise his own name, he is unable to talk (but he makes a lot of noise!), he is extremely strong and it can take 3 people to change his nappy and most worryingly, he has absolutely no concept of any danger, so needs constant 1:1 supervision.

This is where we're asking for help. Lumen has learnt to climb out of his current bed and is able to have instant access to electronics (baby monitors and lights to help soothe him) with cables, he climbs into his window with a blind that he could catch his neck in, he manages to open the door and instantly get into any of the other rooms on the landing and climb up the stairs to our attic room.

Lumen has also been diagnosed with Autism, with that he headbutts a lot! He will either do it through stress, being upset, being tired, sometimes even to soothe himself, but hearing him do it is absolute torture to us. As he has gotten older and stronger, so has his headbutting and it is now causing him to have a mark on his forehead permanently that the skin breaks and will end up bleeding. He also now suffers from nosebleeds from the strength of which he is hitting his head, this will only get worse the older he gets and we have already tried to put foaming around the edges of his current bed but he has worn that away.

We need to get Lumen a bed that is suitable for him now and that he can grow with. One that he can't hurt himself in and also can't climb out of. Unfortunately anything that is made for children with additional needs has a very high price tag, which is why we're in the current position of having to ask for help.

As Lumen also needs to be watched on a 1:1 basis, which can be impossible with 3 other children with additional needs and trying to maintain looking after a house, we also feel the need to add some cameras in some rooms so we will have a constant eye on everything that is happening.

Thank you so much for listening to Lumen's story (sorry it was a bit of a long one). Watching our baby hurt himself every single night and not being able to afford the items that will be able to help him feels like a failure as a mum, as you promise to keep them safe from the day they're born with Lumen really testing us with that.

Any donations that people can spare are appreciated immensely as, like any other parent in this world, we need our little one just to be safe and secure and for us to get some sleep without worrying.

Gaby and Craig Lawbuary-Stock

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