Lexi's story

Created by Danny and Sammy on 05/05/2012
Sam, 25 a senior nursery nurse and her husband Danny, 26 a Specialist Youth Connexions Personal Advisor for the Virtual School for looked after children, from Hemel Hempstead speak about the loss of their baby daughter Lexi and how before Lexi died Keech had helped them to be a family.     Sam said:  "We were delighted when we found out we were pregnant.  Danny even knew before I did!  He said he just had a feeling.  The pregnancy was fine until I reached my 35th week.  It was then, at a check-up that I was told my blood pressure was far too high and needed to come down.  For the next two weeks I was in and out of hospital.     I was told that I had preeclampsia, then hypertension.  The doctors at the hospital said they were managing it and I was sent home.  Three days later I went back in to have my blood pressure taken again.  It was still high so they doubled my medication of blood pressure tablets.     The guidelines state that if a high dosage is administered the patient should be kept in for observation but I was sent home.  The plan was that if my blood pressure continued to be high they would keep me in for observation and induce labour.     I was 37 weeks pregnant and the next day I felt very unwell.  My mum took me back to the hospital where they tested my blood pressure three times.  I was put on a monitor and could hear Lexi's heart.  The nurse didn't like what she heard and called the registrar.       A canula was stuck in my hand with no further explanation.  I was asked how quickly could I get onto the bed and lie on my side.  The next moment I was in theatre having an emergency caesarean.     Lexi was code blue.  She was given five breaths and stabilised.  They had wheeled me into a recovery room which I shared with another women.  The midwife made a risk assessment and said that Lexi was healthy.  Sometime later our little Lexi crashed and was taken to the neonatal unit.     Danny continued:  "I could see Sam was not well.  She was getting hot and drowsy.  I demanded to see a doctor.  By the time the doctor arrived Sam's blood pressure was 175/150.  The doctor and midwife had an argument.  They agreed Sam needed to go to intensive care but there were no free beds so the midwife was told to observe Sam.  This was next to impossible for the midwife who had to cover 35 beds.  However she stayed by Sam's side the whole time.   "I was told to make Sam laugh to help release some of the pressure.  At that stage Lexi was stable, albeit with some breathing problems.     Later on I went home.  As soon as I got there I received a call from the hospital to say that Lexi will be dead within 15 minutes.  I was told to comeback and say my goodbyes.   I arrived back at the hospital and pushed Sam's bed into the intensive care unit next to Lexi's bed.  As soon as Sam started talking to her Lexi's blood pressure went up, she recognised her mum.     We were prepared for the worst, but prayed our little girl would pull through.  After a couple of days, Lexi’s brain activity slowed to nearly nothing, at this stage the doctors wanted to do an MRI.  However to do that it meant that Lexi would need to be disconnected from the machines keeping her alive so we were warned that she might not make it.  It was the longest 45 minutes of our lives.     When the doctor gave us the results of the MRI scan she had tears in her eyes.  We basically had two options, keep Lexi on the machine for the rest of her life or say goodbye and end her suffering.   We made our decision within seconds- we didn't want her to suffer.  This was a decision we never in our wildest nightmares thought we would ever have to make, but when we did we knew straightaway what we had to do for our daughter. We were told that Lexi would have no quality of life and that she would still eventually die, even if she was kept on life support, so we put aside our hopes and dreams and pushed through our own pain to make the best decision for our little girl..     At the time we were told Lexi had a rare metabolic disorder the caused swelling in the brain.  It was only later when we found out that actually it was unlikely to be a disorder, rather it was more than likely the high dosage of drugs given to Sam and the decisions made during and after labour that ultimately led to Lexi’s life being so short.   Whilst Lexi was in NICU we had her christened and the day before we turned the machines off Lexi was moved to a side room within NICU, wHere family and close friends could visit. This was amazing for us as we wanted to show our beautiful daughter off to the world, and if she was only destined to be with us for a short period we wanted to make sure that we made special life long memories that will always be with us. On the day we turned the machines off we made the decision that we did not want to see Lexi die so we went home.  Later that evening I called and was told she was still fighting, however, she we were told that she could still die at any stage. So we again made the decision not to go back to the hospital that night. We said that if Lexi fights through the night then we would need to rest to have the strength to fight with her.   The next morning we went back to the hospital and sat with Lexi, we held her, sang to her, bathed her and loved her more and more.  Every day our fighting princess filled our hearts with pride as she kept doing something they said she couldn't do.     After a couple of days of Lexi fighting we were offered the opportunity to go to Keech.  Michelle and Emily visited us and explained what the hospice did.  We were very worried.  It's a hospice after all - somewhere you go to die, and by now we were increasingly hopeful Lexi would live.     Actually coming here, on our visit was an eye opener.  We were shown around - it was lovely.  Despite being scared at the hospice being Lexi’s new home we felt comfortable there - straight away.     They showed us Lexi’s room - it was so homely.  As soon as we arrived a nurse told us she'd ordered our dinner and told us to leave Lexi with her while we go and have it.  Our family joined us - they were always welcome at the hospice - not just at special visiting times, it was not clinical at all it was an open door policy for our nearest and dearest, just as if we were at home.   Whenever we asked the nurses 'could we do this' we were told it's your daughter you make the decision.  That was such a refreshing change from the hospital where we felt we had to ask for everything, and that we could nothing without someone having to watch.     Keech taught us how to feed Lexi, who had a feeding tube in her nose.  We started doing the night and morning feeds.  We were also taught how to administer her meds.   We could be a family and look after our little girl for the first time.  It always centred on what was best for Lexi, from her very first breath to her last, her needs came first. Turning her machines off and going to Keech was not what we wanted to do, it was what we had to do for our daughter. Throughout our time in the side room of NICU and at Keech we played music and sang to Lexi daily, she was the youngest person to have her own IPod and we made sure we played her all sorts of music from cheesy pop to speed garage and all that’s in between. We created memories that would help us to overcome the pain and enable us to smile through our tears.   One day was particularly special for me at Keech.  I've been a Rangers fan all my life and wanted to see the match against Celtic.  Knowing that Lexi was going to die it was really important that I watched one game with her. I watched it at Keech - it was a really special moment. The nurses supported me with taking Lexi to the front room and made sure she was safe there with me. Rangers won that game 4-2 and I got to see at least one game with my little girl. Which is special for any father but for a Rangers fan, it was made even more special that it was our biggest rivals.   Keech was completely different from the hospital instead of always hearing how Lexi was going to die; we were taught what do whilst she lived. We were aware Lexi would no doubt have some form of disability in her life, and however big a challenge it was going to be we were as ready for the fight as Lexi had been to live. Seeing all the other children at Keech helped us enormously, it gave us hope we saw that no matter how poorly a child was, they could still have a good quality of life.  We realised that life isn't going to end if you have a disabled child. There is help out there and there are amazing organisations like Keech who help thousands of families to be just that, a family. We were never afraid of having a disabled child, we were just afraid that we would never be capable of being good enough parents for her. However, Keech showed us that we had all the love that Lexi would ever need and helped us to learn the skills needed to support her with her life.       The day Lexi died everyone was fantastic.  All along we said we did not want to watch our daughter die.  But then one day she died in my arms, that was a moment I will never forget.  I was sitting on the sofa bed in her room cradling her to keep her warm.  Her breathing was shallow and then I could tell that she was gone.  Then seconds later the machine monitoring her heart stopped beeping.  Throughout Lexi’s short life she enjoyed nothing more than defying the views of the Dr’s and continued to defy even her father with her last breath, I never wanted to see Lexi die, but she chose to die in her dad's arms.   Keech dressed her in the clothes we'd picked.  They also took Lexi's footprints and handprints in a cast and presented it to us.  It was very special, especially for Sam.   Keech is our extended family now, we are always welcome there.  Keech meant we could be a family with Lexi and now they help us to remember the good times and celebrate her life.   We are now determined to raise money and make people aware of Keech.  We now visit the hospice to attend a group for bereaved parents with support of CHUMS (a specialist bereavement organisation).  We have met some amazing people there.  It's strange, you don't want other couples to go through what you have gone through but at the same time you don't want to be the only ones that have either.     We had 19 days with our little girl, which was no were near enough time for us, but it was a life time for Lexi. The six days we lived at Keech were truly amazing and every second there holds a memory in our hearts.  Our only regret is that we didn't go there sooner.