I gave birth to my first baby on the 14th July 2005. I knew it was a girl from the 20 week scan so she already had her name, Mackenzie Lena. She was 10 days overdue so I was induced in the end. After a lovely 8 hour labour she was born at 00:23, weighing 6 pounds 9 ounces. I’d had a perfectly normal pregnancy and an even more straightforward labour, so we were not prepared for the shock that lay in store.

As soon as she was born the midwife noticed she was blue and floppy and having slight trouble breathing. She told my partner to press the emergency button and a few more midwives came in. They said it was just the pethidine that was making her sleepy and that she would be fine. They left her with us and we had a few cuddles for about 30 minutes. Then a paediatrician came in and said she better go down to NICU just to be on the safe side. We had no idea what was wrong with her and waited a long 4 hours before we were allowed to go see her.

When we got there Mackenzie was on a ventilator with a few other tubes here and there. It was a bit overwhelming and I cried. The doctor there said she had a lung infection and a slightly enlarged heart, which was probably caused by the lung infection. He said with antibiotics she would be fine. I said to him 'She wont die will she?' he laughed and said 'No, of course she won’t die.' After a few telephone conversations with family we finally went up to bed at about 6am. We woke up again at 7:20am desperate to see our little girl. My partner went home to get changed and I waited for my mum to get up to the hospital, as I was too afraid to go on my own. She finally got there at 9am. When we got down there we weren’t allowed to see Mackenzie and were told we would have to wait until 11am as the doctor was doing more tests. The nurse said to keep my mum with me, as I would need her support and to get Mackenzie’s dad back up here for a chat with the doctor at 11am. The worst we could think was that she would need an operation or something, nothing could have prepared me for what was still to come.

When we did finally speak to the doctor he said he suspected Mackenzie had some sort of syndrome, similar to Down’s syndrome but not the same. He said her brain was seriously deformed and that she would be brain damaged. He was going to take her for a MRI scan and would meet us back at the NICU at 4pm. I asked the doctor again if she was going to die and he said he had no reason to believe she would. It was an afternoon of waiting and thinking that Mackenzie would be severely disabled was the worst. It hurt like hell but I said no matter what she was my daughter, I loved her more than anything else in this whole world and I would look after her no matter what. I tried my best to be strong, I knew I had to for my little girl and when I didn’t think things could get much worse, they did.

The doctor said that nothing had prepared him for what he saw, or more like didn’t see on Mackenzie's brain scan. There was very little brain tissue there. Her brain had never really developed and it was filled with cysts instead. My partner said 'so basically your saying its just a matter of time until she dies?' and he replied 'Yes I’m afraid so.'

I couldn’t listen I ran out the room crying, more like wailing. The next day, shortly before her beautiful christening, Mackenzie managed to come off her ventilator and breathe by herself. She even started having little drops of milk tube fed into her stomach. She seemed to be doing so well I think I thought they might have made a mistake and that she would be ok. The hospital sent the video of the MRI scan up to Great Ormond Street. At 4 days old we found out that she had severe AVM's on the brain. They said a doctor would come down to have a look at her and if he thought it possible to operate on her he would take her up to Great Ormond Street. An operation would have cauterised some of the AVM'S taking the pressure off her heart and therefore giving her a better chance of survival. They did take her up there when she was 5 days old giving us all a great deal of hope. It was for the journey that she was re-ventilated. She had fought on her own for 4 days, our warrior princess! We were at Great Ormond Street for 2 days in which time they gave Mackenzie another MRI scan and decided that there was absolutely nothing they could do. There were far too many AVM'S and as she had very little brain tissue even if they could operate it wouldn't have prolonged her life by much at all. They said she had deteriorated badly and she would be taken off the ventilator. All her organs were shutting down; it was time to give up the fight.

We followed an ambulance back to our hospital where we dressed her in pink dress and booties, with a matching hat and blanket. She was taken off the ventilator and we took her outside for the first time. She died in our arms after about 7 minutes. She was aged just 7 days, 15 hours and 50 minutes old. 

We have been back to both hospitals a few times and spoken to doctors involved with Mackenzie and have since learned that they have never seen a case as bad as Mackenzie. We have researched high and low and have not heard of anyone that has been as badly affected by this condition as our little girl. 
I will never forget our precious little girl, I am so proud to call her my daughter and to say I am her mum. I am grateful for the time I got to spend with her, as the doctors are surprised she was even born alive. I am so very proud of the fight for life she put up and at how determined she seemed to want to be with us. I miss her greatly and hope one day I will see her again.

Sleep Peacefully Princess