Millie’s Story

As a mum-to-be, I had a high risk pregnancy, due to a blood clotting disease, so was regularly scanned from 7 weeks at Worthing Hospital to ensure both baby and I were OK. My 22nd scan at 34 weeks, picked up a mass on my baby’s left lung. We were taken into a bare consultation room with just two chairs, a table and a box of tissues and advised we were being immediately referred to St George’s Hospital, 60 miles away, for a scan where they would continue with our pregnancy care. We didn’t at this stage even know what was wrong with her, understand why we couldn’t stay locally for her care and felt distraught at this late issue being diagnosed. 

A scan at St George’s Hospital the following day diagnosed left sided CDH, something we had never even heard of. They explained they couldn’t see her left lung at all on the scan so couldn’t identify the level of damage that had been caused. What then followed was a whirlwind 4 weeks of 120 mile round trips every few days for tests and round table discussions with consultants, neonatal team, haematologists, surgeons etc all putting together a plan of delivery for Millie and myself as so many different people needed to be in theatre for us both. I don’t even know how we got through each day as we were just existing. My birth plan went completely out the window! 

It felt like our world was crashing around us and you also don’t realise how much at the time the effect it has on your extended family going through your pain with you. What was supposed to be the happiest time of our lives by looking forward to meeting our first baby in a few weeks was cruelly being taken away with the realistic fear that the odds of her surviving was drastically reduced. The bond my partner and I developed together at the worst time of our lives was truly unbreakable.

The specialists at St George’s planned a caesarean for 38 weeks to give her the best chance of developing still in the womb and getting to a strong weight to fight once born. I had increased amniotic fluid levels so had to ensure I didn’t go into labour early but it was hard to rest with so many hospital visits so far away leading up to the delivery. I went for my pre-op check the day before my planned caesarean and was unexpectedly admitted! My partner swiftly sorted arrangements for our other children and spent the next three days paying for a hotel until he could secure a place at the Ronald McDonald house in Tooting. My caesarian was then booked and then cancelled twice due to no incubator available in intensive care for Millie. The stress of waiting in a ward, not knowing each day whether today was the day she was to be born and also not knowing the level of damage the CDH had caused, took every ounce of energy from us.

When I arrived in theatre for my caesarean I couldn’t believe how relaxed everyone involved made it for me. The neonatal nurses were even singing and dancing to the radio around her incubator waiting to take her immediately so it was reassuring to see how calm they were and my baby was to be in safe hands.

The decision was made for Millie to be paralysed and ventilated immediately from birth so she wouldn’t use her lungs to breath which could cause more damage. It’s hard for people to understand the impact it has as a mum to not hold your baby against your chest once delivered or your baby not being able to cry to know things are ok. They successfully ventilated Millie in less than 2 mins and took her away immediately. The first glimpse I had of Millie was her being wheeled passed me in her incubator as she was taken to intensive care. All I could think of is my baby looked ‘dead’ as I laid in theatre waiting to be stitched up not knowing what was happening to her. Millie was a great weight at 7lb 5oz so I had to find every bit of faith inside to believe that she had the best chance of surviving.

I didn’t get to see Millie that day as I couldn’t get into a wheelchair after my surgery and there was no room for me to be taken down in a hospital bed. Instead I laid in a ward full of ‘normal’ mums who had their babies next to them feeding and crying, the things most new mums take for granted. If there is one thing I could change it would be for other mums with babies in NICU to not have to be in a ward with other mums who have their babies as it’s heartbreaking. To top off my day the Bounty lady came into the wards, to sell their photography package, but then swiftly exited my bay once she identified I didn’t have my baby there and therefore she didn’t have a sale!

The first 48 hours were crucial and I have never experienced such pain as I did looking at my baby girl swollen and paralysed from all of the drugs being pumped into her. I couldn’t hold her but could put my hands through the incubator to touch her tiny hand which was black and blue already from the cannula. I was scared to touch her through the incubator as she was covered in so many wires, on life support and looked so fragile. I just couldn’t stop looking and staring at her, questioning why this had to happen to my baby girl. 

We made sure our family travelled up immediately to meet Millie not knowing if she would make it but also as support to us. It was so hard dealing with the situation without friends and family close by and so far from home. The nurses looking after Millie were unbelievable and kindly gave us a Bliss booklet to read of a support network available to us. 

On the third day the surgeon phoned us first thing, explained Millie’s gases/levels were unexpectedly in range and that they wanted to operate on her within the next hour! We had initially been informed to expect Millie to be in intensive care for a couple of weeks before any surgery so although we were apprehensive we knew this small window of opportunity needed to be taken. The scan had revealed that Millie’s small bowel, large bowel and kidney had all been pushed through a hole in her diaphragm and were resting on her left lung. As a result her left lung was crushed, only operating at 3/4 of its capacity and her heart was pushed across to the right hand side.

I was discharged that day but unfortunately got readmitted after 2 hours in agony after they discovered I had a huge bleed in my stomach. I then required further surgery to remove the haemotoma so ended up spending another week in high dependency myself and then had yet another bleed which painfully got infected! My poor partner was running between the two wards to see us both and bringing me down in the wheelchair to see my baby girl. One day he managed to walk 13 miles without even leaving St George’s grounds! I didn’t manage to hold Millie for 8 days until she was transferred to the high dependency unit and I was well enough to have her placed on my lap. As a mother waiting for 8 days to hold your baby in your arms was heartbreaking and I must say I broke down in tears never knowing if I was ever going to have this moment.

My partner was able to stay on site at the Ronald McDonald house who offered amazing support both by putting a roof over his head to avoid the 120 mile round trip each day but also by offering to have a chat when he finally got back in the evening mentally exhausted. Our other children were also able to stay there at weekends and extended family were able to use the kitchen facilities and garden just to have a break from NICU.

Millie continued to amaze the doctors by recovering exceptionally well from her operation and was downgraded to high dependency 8 days after being born and then to special care one day after that where she spent 5 days before being transferred to special care in Worthing for 3 more days. We were not expecting to have even left St George’s hospital before Christmas so her recovery amazed us all. 

We have always encouraged Millie to do everything possible to strengthen her lung and to have the most healthy life possible. She started swimming lessons from 9 months and now at 3 years can run faster than most adults I know!  To look at Millie now you would never know the battle she’s had to face so early on in her life and to all our family and friends she’s known as our warrior princess. 

We often come back to St George’s for Millie’s appointments. It was so special when Millie got to meet Dr Francis who was part of the team who saved her life and once upon a time I could never have imagined that one day I’d be walking back down the nnu corridor hand in hand with Millie. To show our gratitude to everyone at St George’s we are raising money for First Touch