Grayson's Story

We had a dating scan when I was 13 weeks pregnant and found that Grayson had a very large Cystic Hygroma (swelling) that encircled his neck.  The very next day we were back in the hospital seeing a specialist and had a biopsy taken from the placenta in order to carry out tests on his chromosomes. We were told that as the swelling was so large we only had a 3% chance of our child being normal and was very likely to have a condition where he would not be compatible with life. We were advised to consider the option of termination.  We chose to wait until all test results were back and to give our little boy a chance of life.  Three days later the tests came back clear and we found out we were expecting a little boy.  We then saw cardiologists who scanned his heart at 18 and 22 weeks where at that point there were no visible signs of any heart condition and we were told we now only have 1% chance of there being any serious problems.  At 26 weeks we had another heart scan and were told that the left side of his heart was smaller than it should be and the cause of this was likely to be due to the narrowing of his aorta.  We then had regular heart scans to monitor his condition.  At each scan it appeared to be progressively worse and at 38 weeks we were given the diagnosis of Hypoplastic Left Heart Syndrome.  We had to come to terms with the fact that our unborn son was to start his life undergoing a series of major heart operations.  Once he was born he was taken straight to NICU and within hours was transferred to Bristol Children's Hospital in order to prepare for his first operation within the next week.  It was at this point that they were able to have a better look at his heart condition. They found that he had a very rare condition involving dysplasia of all his heart valves and his heart muscle itself was also very abnormal. In view of this the outlook for survival was very bleak.  Following several discussions with the medical professionals we decided that palliative care would be the best option for Grayson to keep him as comfortable as possible in the short time he was expected to live. 

One of the Cardiac Liaison nurses mentioned the option of taking Grayson to a hospice.  That evening Rich and I talked over how we could give Grayson the best little life that would also allow us and our 4 year old (Aiden) to spend as much quality time together as a family of 4, for however long that may last.  It was obvious from the time we had already spent at the hospital that it was not the ideal way to do this, as Grayson was connected to so many machines and lines it was at times very difficult to even have short cuddles.  Aiden would become very bored of being beside a hospital bed as any 4 year old would.  We told the nurses the next morning that we would like to consider the option of a hospice. So plans were put in place for us to visit the next day for lunch.  We were very nervous of what we would see and how we would feel when we went to visit.  But all those fears subsided as soon as we walked through the door.  It felt as if someone was giving us a giant, comforting and protective hug and for the first time in days everything just felt right.  There is something magical about that place. Yes there is some sadness as you know what places like those are for. But somehow that sadness is turned into happiness, love, hope and acceptance.  This is exactly what we wanted.  As soon as we were given the diagnosis I just wanted to rush back to Grayson and promised myself that whatever it takes we are going to make some wonderful and happy memories and not waste our precious time with sadness.  The hospice was the place in which we could do this and have the constant support from nurses and doctors but in a home from home environment.  It just felt very natural.  We found ourselves walking around saying over and over, 'this is it, this is perfect'.  It was almost as if someone had climbed into my head and taken note of everything I wanted for us as a family during this time and put it into place in the form of the hospice.

When we got back to the hospital we immediately got the ball rolling for our move to the hospice.  Our first day there we waited nervously as the ambulance arrived. It was feared that even the transfer may be too much for Grayson to cope with. But he made it. Within minutes of arriving I was able to have my very first cuddle with him and hold him close to me like a normal baby.  After 10 days in the hospital he finally felt like he was mine.  As we sat in his beautiful room we got to know him all over again and were almost as if it was our first day with him, just like it should be after babies are born. 

As we sat, cuddled and cooed over him, the sun shone in from the garden and we noticed for the first time that he had the most beautiful red hair.  We spent the first few hours hoping he would stay with us long enough to say our goodbyes.  Our son Aiden came in after pre-school to join us.  We hadn't told him that his brother wasn't going to survive, as we decided we would wait until we were at the hospice where we would have the support of the sibling team.  It was the most difficult thing we have ever had to do in our lives and it was so hard to see one son's heart breaking, whilst the other son was struggling to keep his own beating.  But as we expected the hospice staff were there and soon enough Aiden was running around and making the most of the fun things he could do there, whilst having his baby brother there to share those memories with. 

Before we knew it the first day was over and instead of just sitting and waiting for Grayson's time to come, we were able to enjoy him and for what felt like a long time giggle as we did so.  Whilst I was at the hospital I longed and longed to just do the simple things with Grayson.  I wanted to lie on a bed with him and hold him so close I could feel his breath on my face. So the first night at the hospice this is what I did....all night.  I led there and watched him sleep in my arms trying to absorb every little detail of him, the way he looked, how he smelled and the feeling of his velvety soft skin.  The hospice staff where there to help with the tube feeds throughout the night and to answer any questions or concerns I had.  They even saved me from a mild panic when Grayson had pulled out his feeding tube.  It was perfect, just lying with him on my own and instead of the noise of machines beeping and the hustle and bustle of a very busy intensive care unit, all I could hear was the sound of our hearts beating.  I must have fallen asleep at one point as I was woken up by soft tapping on my face.  I opened my eyes to see Grayson reaching out and touching me whilst looking into my eyes.  In that moment I felt that he knew I was his mum and from that moment on our bond was sealed and would never be broken.  All I could do was look back at him and tell him that I love him so much and that he can go when he needs to.  I had what I call 'my mummy moment' that I would cherish forever. 

As I am writing this I am crying.  I am not crying tears of sadness as you would expect, but tears of joy, as I feel so lucky to have been able to have the opportunity to have that special time with my son. I remember as the birds began their morning song outside it felt like a huge achievement. We made it through the night and for the first time he got to hear something so simple yet so beautiful as the birds singing.  All he had known until then was a dark corner in a noisy hospital, but now at the hospice he was getting the opportunity to see the world for all its beauty.  I had taken him outside that morning so he could feel the warmth of the sun on his face, the wind in his hair and to hear the nearby sheep and cows starting a new day.  Little did I know that during the next 4 weeks at the hospice we got to experience a whole lot more than we could ever imagine. 

We were encouraged by the staff to do anything we wanted to do with him no matter how impossible we thought it might be, they did all they could to help us achieve it.  It was so reassuring to have them there to give us the confidence and support we needed in order to really make the most of not just every day, but every hour and minute.  The staff even gave Grayson a little surprise birthday (the only one he would have) when he reached the huge milestone of being 1 month old. It was amazing to hear everyone sing Happy Birthday to him. We were eventually able to take Grayson home with the support of the hospice and medical teams. We returned to the hospice the day Grayson passed away when he was just 10 weeks old. 

The hospice was as amazing as ever, helping us with funeral arrangements to give Grayson the most perfectly fitting tribute.  They have a wonderful room called Starborn where Grayson was able to rest until his funeral.  It allowed us the much needed time to say our goodbyes any time of the day or night. Aiden once again had the much needed and specialist support from the sibling team to help him come to terms with what was happening.  The hospice has become almost like family to us now and we are grateful for all that they have done for our family.  We don't know where we would be without them.

Because of this we all have some fantastic memories that will last a lifetime that we could not have achieved if we had been anywhere else.  And for that I am eternally grateful.  I class myself as being very privileged to have been able to go to the most magical and special place.  And for this reason I have decided to make it my lifelong mission to give back to the hospice in any way I can, to make sure other families with life-limited children are able to make the most of the very precious time they have.