Our daughter's palliative care - Laura's story

Laura And Lylah Rose's Story Hero

Laura gave birth to her daughter 39+1 weeks suffering severe brain damage. Sadly, Lylah-Rose passed away at eight-weeks-old.

My third pregnancy was much tougher than my first two but scans and tests continued to show that everything was normal.

At 39+1 weeks, I turned up at my midwife appointment with my baby girl moving as normal. After having a chat with the midwife, it was time to hear the baby’s heartbeat.

You can’t really describe the horrible sinking feeling you get when you can’t hear a heartbeat. It took the longest five minutes of my life for the midwife to detect the heartbeat and when she did it was very slow; only 60bmp.

It only took the ambulance 10 minutes to arrive, in which time I had managed to arrange for someone to take care of my sons and for my husband to meet me at the hospital.

At the hospital, I was monitored for 45 minutes as the midwives tried to find my little girl’s heartbeat. In that time, my own heart was slowly sinking.

After my husband arrived, I was taken for an emergency c-section. It took several hours for me to come around fully from the general anaesthetic. When I did, I found out that my precious daughter was in NICU fighting for her life.

I was told that she had weighed 7lb 15oz at birth and was stillborn. The doctors worked for 21 minutes before her heart was started and this had resulted in severe brain damage. I was utterly devastated but having lost 1.9 litres of blood myself I couldn’t even go and see her.

We called our little girl Lylah-Rose. When she was five days old, the NICU doctors took her for an MRI scan to determine the extent of her brain damage.

The following day was the worst of our lives. The doctors advised my husband and I that our beautiful Lylah-Rose was brain dead and there was nothing we could do to help her.

My world felt like it was caving in. How was I going to tell my four and six-year old sons that their baby sister was going to die? When we broke the news to them it was so horrible. I still remember how hard my oldest cried for her and it broke my heart.

We were all moved to Naomi’s House Children’s Hospice to say goodbye to Lylah-Rose. She was given roughly 12 hours after the respirator was removed before she would slip away forever. That night was the longest of my life. Neither myself nor my husband wanted to sleep in case we missed her going, but Lylah-Rose decided to give us more time with her before she left. The 12-hour time limit passed and she just kept going.

We had three amazing days with her and our sons at Naomi’s House before we had to return to the hospital. All of the doctors were thrilled to see that she was still with us and decided that we could take her home for palliative care. Before we left, Lylah-Rose was fitted with a nasal gastric tube because she was unable to suckle. I spent three more days at the hospital learning how to feed her and care for her on my own.

When Lylah-Rose was born I never imagined I’d have the opportunity to bring her home so walking through the door with her was a fabulous feeling. We knew that she could stop breathing at any point but we weren’t going to let that get in the way of us making some amazing memories.

Having come off the saline drip and started on milk, she lost a whopping 13oz by four weeks old. I took it upon myself to up her feeds from 41ml of milk every three hours to 45ml of milk every two hours. Thankfully, she started to look healthy again.

Everything was going great and Lylah-Rose was doing normal family things but it didn’t last. At eight weeks old, she began to fall ill. She wasn’t waking up and was limp and cold to touch. At 7.00am on 6 October 2017, her temperature dropped to 33.7°C. I rushed around getting ready and took her to the hospital.

On arrival, she was checked over by a nurse and her temperature had risen slightly. I thought things seemed to be on the up until the nurse checked her oxygen levels which were scarily low. Lylah-Rose was taken to a heated bed where she was stripped and warmed, but it wasn’t long until the emergency buzzer was pressed and more nurses and doctors flooded into the room to help. No matter what the medical staff did, they could not stabilise her.

I called my mum and asked her to get my husband and sons to the hospital as soon as possible because it didn’t look like Lylah-Rose had much time left. As I spoke to my mum, one of the doctors was using a bag to physically breathe for my baby girl.

When my husband arrived, a doctor told us that Lylah-Rose had caught an upper respiratory tract infection as a result of a cold and wasn’t making any effort to breathe on her own. This was it – our extra time had run out.

We were taken into a small room where the doctors disconnected everything from our daughter and handed her to me. They then stopped pumping air for her. It was devastating to watch this beautiful tiny baby struggle for air and then just stop.

It took us a while to accept that she was gone and when we did it was bone crushingly painful. We are so thankful to Naomi’s House who let us stay together as a five-piece family for a couple of days as we adjusted to not having our angel with us anymore.

I wrote this blog post a week after losing Lylah-Rose. I’m still in shock and disbelief that this has happened. Sometimes I wake thinking it was all a nightmare and I am still pregnant, then reality sinks in and I relive it all over again. I hope things might get a bit easier for all of us as time goes on after her funeral. Things feel quite bleak at the moment.

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