Sunday, 26 September 2010

A year on

Well its been a long time since I wrote anything on this blog. I tried a few times to post and gave up as it was all just too hard to write down. This past year has been the worse and best of my life in so many ways.

Zakk our beautiful son has gone, but he has left a legacy that has taken on a life of its own and has overwhelmed us so many times and brought wonderful amazing people into our lives who without him we never would have met.

There is no loss greater or more painful that the loss of a child and though after a while I began to feel that I should be doing better than I was as Zakk was not with us long enough for us to even get to know him, a wonderful woman pointed out to me that the loss of a baby is in many ways worse than other grief as parents are left with so few memories to keep them going and the whole future of their child and all his potential has been torn from their life.

In April this year I met Sharon Russell for the first time when I went to Scotland to a memorial fund raiser for her son Lucas. We had been put in touch some months before by Prenatal Partners for life, a wonderful website helping people like us with a negative prenatal diagnosis. Since then we have met up nearly every month for one thing or another and in June we began Angelversary together, a charity in memory of our 2 sons, sending out gifts to bereaved parents to help them through the tough days and let them know their Angels are not forgotten. We've done some fundraising with the help of friends, family and work colleagues and we hope more people will look for us on face book and join our mailing list. We have both been in touch with other families near us with similar stories to our own, and we are doing all we can to raise awareness about Trisomy 18 & 13.

I decided too some months ago to complain about the awful lack of care I received for Zakk because of his genetic "label" and that is something that is ongoing as unsurprisingly those involved are doing all they can to deny and lie about this. Its a hard decision to make and I have spent my time feeling like I am banging my head against a brick wall and I am not up to the fight, but then I just remind myself that my experience and time with Zakk could have been so much better had he received any life support at all, and he deserved so much better... Why should he have been less worthy of help than any other baby just because of a diagnosis, and some of the things that happened to us were so awful they still haunt me all these months later.

There is no monetary gain to be made by this, but there is a chance albeit a slim one that maybe something could change, maybe a doctor might think twice before they tell another mother "you wouldn't want this baby to live, it would ruin your life" !!! or before they continually tell parents "this baby is incompatible with life" or for me the worst of all, before they tell you only part of the truth about why they want to conduct tests and don't tell you up front that if they get a particular result all plans for treatment and even the most basic care for your baby will be denied him at birth and he will be handed into you arms and you will be left alone with him to die.

So I push on in the hope that maybe something might change, I have so many issues that to even get some small changes in basic treatment (the right to have a normal crib provided for my baby in hospital) would be an achievement.

On 11th August we remembered Zakk in a special way on what should have been his first birthday but what was instead his first Angelversary. We had a service in the morning followed by a balloon release and party for our friends and family to celebrate his short life. Its was a sad but lovely day and we did our best to make it a positive one and remember how his legacy lives on and he inspires us so much to keep going and do all we can to honor his memory.

This weekend Sharon came over from Scotland with her husband Andy and yesterday we all attended a sponsored walk for Cathal Cartmill organised by his Mum Annamaire to raise awareness for trisomy 18 & 13 and to raise some much needed funds for our charity and two others. Cathal was born on 8th July this year and lived for 8 hours. Also there was another friend Roisin who lost her little daughter Cerys in 2008 to the same condition. The fundraiser was a great success and Annamarie raised over £6,000 which is just amazing. It was lovely for us all to be together and there is definitely strength in numbers. I think we are helped by spending time together and knowing we are not alone.

Friday, 27 November 2009

Yesterday I spent a lot of time thinking about all the parents I know about who have had a child with T18. A few are alive but most like Zakk are sadly no longer with us. There are so many. When we began this journey we felt totally alone as we knew no-one else in a similar position, and now I know that is far from the reality. There are babies born around the world every day and many are not fortunate enough to be born alive.

As parents our experiences are so different and so much depends on the help and understanding of medical professionals who's own knowledge and understanding of our children is in many cases sadly lacking. I always got the impression from Doctors I dealt with that by refusing to intervene to help Zakk or treat him they felt they were doing me a favour, like they knew best and my constant insistence that I wanted him kept alive was a foolish notion. In the end they hid behind their policies and I could do nothing. A fact I may never learn to live with, although I know my grief is still very new, and I hope my anger will dissipate in time.

This week I know more babies have died because they had T18. I have no doubt that some babies could have more time with their parents if more intervention was given to help them and I have no way of knowing if this would have helped Zakk live a little longer, but I would have liked the chance to find out. I am grateful at least for the care I was given after Zakk died by the midwives and nurses who dealt with me. I cant speak of the Doctors as from the moment I was moved to a private room away from the delivery suite I did not see or hear from any of them nor have I since. For me that says it all...

The hospital staff I did see helped me gather mementos of Zakk by taking prints of his hands and feet and making sure I was given his little blue hospital tags, even though as he never made it to the nursery, he didn't get to wear them. I am grateful too that I was allowed to keep him with me throughout my stay and while I needed no encouragement they were keen that I should nurse him and make the best of the all too short time we would have. This time for Marcus and I was so precious, as was the time we had with Zakk when we took him home with us and he stayed for two days before his funeral. I cannot even begin to explain how important and special this was for us and for our friends and family.

I had been told by others I know who sadly lost their own children in the past that every moment is precious and Marcus and I should do what we wanted, take the time we needed and take as many photographs as possible. That is exactly what we did, and we will both be forever grateful for this advice. We have Zakks hand and foot prints taken by the midwives, we also took his footprints in clay and a lock of his hair. These mementos and the hundreds of photographs we took over the four days Zakk was with us are our most precious possessions. As a parent in a devastating situation it would be very difficult to be strong and assertive, so we realise how luck we were that at least those looking after us respected and understood what we needed, and helped us as much as they could. As parents we have to live our lifetime on the all too short time we had with Zakk, but I know from the experience of others including my own parents, how lucky we really are to have had the time we did and the memories we made with Zakk.

Thursday, 19 November 2009

14 weeks, 2 days & counting

Last Sunday we went to a rememberance service for all those who died in the last year. I never thought I'd get through it but I did and I was glad I went for Zakk. I'm due to return to work on Monday, something I dread only because it feels like I'm having to move on with life and go back to normality, and I dont want to do either. The thought of life going on and our wee man not here living it with us is too awful to dwell on. People keep asking me about Christmas and if my daughter is excited, the truth is I dont even want to think about it. Its cancelled as far as I'm concerned, and while we will make an effort for her sake, shes so young it wont need to be much of an effort which is fine by me. I know life goes on, but I dont have to like it...nor do I need reminding of that all too obvious fact...

Today I discovered 7 day candles. Not sure how I missed them before but I guess I wasnt looking. So Zakks grave is lit up now day and night, a silly little detail but one that makes me feel a little better, and I make no apology for doing whatever it takes to get me through each day.

Thursday, 12 November 2009

Three months on

Yesterday it was 3 months since Zakk left us far too soon. I continue to miss him so much and long to nurse him again. I would give anything just to have him back even for a few minutes. Life is not easy but I struggle on with the help of friends and family. I try to be a good Mum to my other children and hope and pray I'm not failing miserably. They are so important to me but I think it will take me a long time to come to terms with the loss of my baby boy and the tears are always there bubbling just under the surface.

This morning I reluctantly opened my blinds for the first time, I'm not sure why its taken me so long but I think I just didnt want to let the world in and I dont want to feel that I'm moving on or that Zakk is being forgotten about. I'm sure some of the neighbours must have thought it was a bit strange. Last year someone who lives near me died, I always used to see him sitting by the window watching the world and I noticed that his wife did not open her living room blind again. I used to wonder why but now I understand.

Today I told myself it was Ok to let the light in because I know no matter what else happens in my life I will never forget about Zakk, and I know a few other people who will remember him with me always. My life will never be the same again no matter what I do or where I go and I will carry Zakk with me in my heart everywhere.

I know too that normal life goes on even though I dont want it to and as much as I resist I have to go on too. Today that is beginning to rest a little easier on my shoulders as I feel the spirit of my boy who fought so hard for his own life, willing me to go on with mine. As much as I dread the future without him, and mourn the loss of the life he could have had with us, I know that can never be no matter how much I wish it.

Last night as I left Zakk I was badly in need of some reassurance that he was OK and somewhere better, happily watching over me. He has a little angel with a light on his grave and it wasn't working despite my best efforts to fix it. The first words I heard as I got into the car and switched on the engine were from the chorus of a snow patrol song (run) "light up, light up, as if you have a choice, even if you cannot hear my voice, I'll be right beside you dear." I'm taking it as my sign and doing the best I can Son.

Monday, 19 October 2009

Today after much debate I have eventually decided to publish the blog I began to write in September despite my own inclination to keep my very personal story a private one, in the hope that if it gives some comfort to just 1 person in a similar situation it will be worth it. I would not have missed this journey for the world, much as I still long to have had a different outcome for my beautiful baby son and wish more than anything that he was still with us...
Our Journey with Zakk

On April 15th 2009 we went to hospital for a 20 week scan to ensure all was well with our baby. This took so long that we both knew something was wrong and when we were told there appeared to be a hernia we both thought it wasn’t very good but we had no idea how serious it really was. We were taken aside to wait for a Doctor who would come and explain what a congenital diaphragmatic hernia (CDH) was and what would happen now that it had been detected.

The doctor told us babies with this condition had a 40% chance of survival providing life saving surgery was carried out, normally within 48 hours of birth, and that we would be referred to the Royal Victoria Hospital(RVH) in Belfast to have the diagnosis confirmed and arrange special care and treatment for our baby after the birth. He also told us the hospital would want to carry out further tests to ensure nothing else was wrong, probably amniocentesis and we would have to wait a few weeks to be called for an appointment and possibly a few weeks after that for results.

We left devastated and in tears but we were hopeful nothing else could be wrong and that our baby would be one of the lucky ones who would survive the surgery if the diagnosis was confirmed. We had no idea then what really lay ahead.

From that point every waking minute was consumed by this awful news and there was nothing we could do except wait. I began that night to research the CDH and while it was much worse than we had initially thought it was something we knew could be treated and our baby could survive to live a long, happy and full life.

On 17th April a letter arrived with an appointment at RVH the following Thursday 23rd. This set me off worrying even more as it had come so quickly. I decided we needed to stay positive and that night we decided on 2 names for our baby, Zakk if it was a boy. We tried to keep busy and get on with things for the next week. Marcus went to work and I spent hours on the internet learning as much as I could about CDH.

On 23rd April we headed to the RVH for our appointment. The Doctor confirmed the CDH and was very keen to carry out amnio as she put it to rule out any other issues and ensure they had all the information possible to be well prepared and do the best they could for our baby. We agreed and it was done there and then. We were reassured as everything else looked OK although they thought the baby could have a clenched fist, but again we were reassured this was a minor thing and could be corrected. We also met a geneticist who asked us questions and discussed possibilities with us but again from our scans she too felt any other problems were unlikely.

We were booked back for a further appointment the next week and a heart scan a few weeks later, and we went home feeling anxious but hopeful that all would be well and hoping the results of the amnio would be back soon and would give us some peace of mind.

The next day I was again very anxious but resisted the temptation to research any possible genetic conditions as I felt I did not want to know and did not want to increase my worry unless I really had to know. I still naively thought the worst possible outcome would be Downs Syndrome but that I would cross that bridge if I had to and deal with it as best I could then, taking whatever child God sent me. I still had every hope my baby would live and be OK. Our daughter Cerys was just 20 months and had to go to my parents for the day so I could rest after the amnio as advised. That afternoon at 3.30 the phone rang and it was the geneticist. The call was a surprise as I had not expected to hear from her for a while. She explained the results were conclusive and our baby had Trisomy 18 (Edwards’s syndrome) and there was no hope as nothing could be done, our baby would die. She confirmed he was a little boy and he could be born alive if we were very lucky but would die soon afterwards as it was in every cell. There was a high risk that he would arrive early and be still born as many babies with T18 are.

I was so shocked I could not speak and could barely breathe. I hung up the phone and called Marcus who I could barely speak to either, I just told him to come home between sobs and gasps for breath. He left work and was home a while later. It was less than an hour but felt like several. We were so heart broken by this news, we will never forget the devastation.

Our hearts were broken and I had never been so sad before that day. I had the ominous feeling that this was just the beginning of our heart ache. From then on Zakk was in my every thought. I was consumed by grief and my baby boy was 4 months from being born. I did the only thing I could, and went back to the computer and began to research trisomy 18. I begged God to let Zakk live long enough to let us hold him just for a little while and to get him Christened, but I had lost all hope.

During our second visit to RVH we were told Zakk could not live and they confirmed no-one would do anything to repair his hernia because he had T18. It is the view of all the medical professionals I have met that T18 is not “compatible with life” as they put it and they will not intervene in any way to help a baby like ours. The Doctor advised me I could return to my local hospital to deliver the baby if I wanted as nothing would be done anyway and it would make no difference to the outcome where the baby was delivered.

We were devastated beyond belief, and every hospital visit after that just brought more bad news when we thought things could get no worse. The baby was very small, his heart had an atrioventricular septal defect with a ventricular imbalance (AVSD),no surgery would be done for this or the CDH as he was “not compatible with life”. I got so sick of hearing this from doctors I wanted to shout at them all “who are you to tell me my child doesn’t deserve to live”, and yet I was intimidated by their expertise and while I later questioned many things, initially I accepted what I was told and felt hopeless.

We were advised to consider a termination which I could not even think about as this was my baby and Zakk was already as much a part of the family as my other children. I could not let him go or play any part in ending his life earlier than God intended.

I cried day and night but I kept on looking at the internet and came across Prenatal Partners for life and a few other web sites were I saw children alive and doing well despite having T18 or other serious chromosome disorders. I contacted some of these web sites and found other parents who understood the dark place we found ourselves in as parents of a child with a very negative prenatal diagnosis. From this sprang hope that all was not lost and from this hope we both began to pick ourselves up as we realised Doctors don’t know everything, babies just like ours can and do survive, and sometimes even miracles can happen.

It was this hope we needed to help us through each day, greatly aided by the support and prayers of others. From then on my days were filled with lots of research, I thought if I could find the right Doctor he could help us save Zakk. I was upset that no-one I spoke too would agree to help keep Zakk alive and this for me was the hardest thing to accept. I knew my child’s life would never be like my other children. He would probably not communicate as they did or be as able bodied but I could not accept that he didn’t deserve to live, or that no-one was prepared to help us keep him alive when that was the only thing I wanted.

When I went back to my local hospital we were asked to attend a meeting where we were formally advised nothing would be done to help our baby to live, and what would happen when he died. We were told about the mortician and asked to think about what we wanted regarding taking our baby home and where we would bury him. We were told there was no rush in making these decisions until the time came, but we needed to bear them in mind… I think part of the hospitals motivation was to also try and re-assure us that we would not be put in the post natal ward with other babies, and they would do their best to give us privacy in our grief, but I was distraught by the whole thing. Our precious son was being written off by Doctors months before he was even born and no-one could understand the shock of hearing these things unless they too have been in the same situation. Instead of looking for a new pram we were now deciding where we wanted to bury our baby son and feeling under pressure to make such awful decisions in-case he arrived early as predicted.

Never before had it even occurred to me despite years of life experience that anyone ever carried their unborn child for months with such a heavy burden. I even knew family members who had lost babies and still it had not registered with me that anyone could know so far in advance and go through months of anxious waiting and hoping.

I have always struggled to accept no-one could help Zakk, but I could find no-one within my reach who said they would or thought there would be any point. Everyone I spoke to felt that with his combination of problems it would only cause him unnecessary suffering to artificially prolong his life by attaching him to machines, nor did anyone feel he would be able to survive surgery. I just feel that if I had unlimited resources or lived somewhere else maybe he would still be here with us now. Or maybe I just didn’t try hard enough to find a more sympathetic Doctor. Knowing I was treated within the policy guidelines of the National Health Service in the UK does not console me in any way. I continue to struggle with accepting these decisions even now, and can only pray that some day I will be at peace with them. Although I can’t help feeling these policies are wrong and a parent should have a right to choose to ask for more aggressive measures to be taken in an attempt to save their child if at all possible rather than be forced down a route of comfort care if it is not what they want.

We had a number of family birthdays between May and August and we lived through all these events in an almost auto pilot fashion. We went through the motions, celebrated the birthdays and tried our best to act as normally as we could, while all the time hoping and praying Zakk would by some miracle be born alive and be OK. I had trouble sleeping not helped by the usual pregnancy issues as I got bigger. Everywhere I went it seemed like the world was pregnant and I was the only one whose baby was going to die. I got really cross when I saw pregnant women smoking or worse, drinking alcohol and sometimes I wondered what I had done to upset God so much. I had been so careful to stay as healthy as I could and have a proper diet and this was what I got for all my careful care of my unborn child. I felt guilty for thinking previously Downs Syndrome would be so terrible and wished that Zakk had this instead as at least he could live. I bitterly regretted allowing the Doctor to carry out the amnio test as I felt they would still be planning for surgery and doing all they could to help Zakk had they not known for certain he had T18. Realistically I know that they would have soon figured it out after he was born, but I still feel we would have got more time with him as they would have helped him even for a little while in the absence of this information.

The next few months were filled with hopeful anticipation as we approached the birth of this very special child, coupled with dreading the day as I knew Zakk was safer where he was. I didn’t want him to be born, knowing he would face such a great struggle to live and I would not be able to help him, nor could I find any Doctor willing to do anything except agree to give him a little oxygen if he was born alive and struggling to breath.

Every day I carried Zakk was a blessing. Every move and kick was a great joy, much more than with any normal pregnancy as my little boy was reassuring me he was alive and well and getting stronger. I had been told I would not feel much as he would be weak and very small, so when I felt Zakk it was wonderful. Doctors don’t know everything. Zakk moved well and did not feel weak or small and with every movement my hope strengthened.

Many others helped us through this journey. One very bad day my sister sent me a text message containing a little prayer:

May God grant you the strength and faith to count your blessing, not your crosses, count your gains, not your losses, count your joys, not your woes, count your friends, not your foes, count your smiles, not your tears, count your courage, not your fears.

Gradually my mood changed as the time went on and Zakk continued to defy the odds and live. My hope grew with the help of people who were there for us when we needed support, my family and close friends and those in the Trisomy family who have also been down this road. Just knowing people such as those from Prenatal partners for life remembered us and many people we were unlikely to ever even meet in person kept us in their prayers brought great comfort and strength and helped us face each day with hope rather than hopelessness. The constant emails from the trimed list that I had joined seeking out information was not only a great source of advice and help but also comfort as I got to hear of the many children living with all types of rare trisomies including T18.

I read a lovely poem on the Prenatal partners for life web site, ”God sent to me an Angel”, and it has helped me through many dark days then and now.

To me my baby was perfect and special and I loved him. I prayed for minutes, I wished for hours and I hoped God would grant us the miracle of days. Every single movement Zakk made each day made up for all the worry and upset we went through. Every second I carried him really was precious and I only wish now I could turn back time and feel him move once more.

I went week about to the Doctor or Midwife to check he was alive and had a heart beat, but Zakk kept reassuring me he was OK. The appointments with the Midwife were OK as I only saw one of 2 midwives and they were both great, very encouraging and supportive, but I hated the Doctors appointments as I was waiting in a room full of other pregnant women and I so wanted to be just like them with their healthy babies.

Life is full of unexpected twists and turns. I had always feared having a child with a serious disability and wondered irrationally if this was my punishment. I knew the risk increased as I got older I just always thought I could never cope and now I found myself having just such a child and hoping and praying he would stay with me and not die. I just wanted Zakk to live and not be suffering or in pain. I didn’t mind what he could or couldn’t do, I just wanted him with me and I promised God I would look after and cherish him no matter what. It is a strange thing to wish if only your child could have had a less serious chromosome disorder such as Trisomy 21 as at least it would not be as the Doctors described T18 a “lethal Trisomy”.

Zakk did not come early, and the week before my due date I was persuaded that to give him the best possible chance and avoid putting him through the trauma of a natural birth I should have a caesarean section as his heart coupled with the CDH and T18 left the situation very dire. We were booked in for 11th August and suddenly Zakk’s birth was upon us far too soon.

So many times before he was born I wondered what would happen. I hoped and prayed for a miracle, and I wondered how I would get through if my miracle didn’t come.

Zakk came into the world on 11th August at 12.10pm weighing 5 lb and looking just like the perfect and beautiful Angel he is. He was given a little oxygen as promised to help him breath, and a midwife Christened him for us as we had wanted. After a few minutes a paediatrician came to speak to us and advised us the oxygen was not helping and he would only live another minute or two and we were asked if we were happy they stopped and gave him to us otherwise we would not get to hold him alive.

We didn’t want to waste his last few minutes and we wanted to hold him in our arms so he was handed to his Daddy at which point he opened his left eye to the Doctors surprise. When I took him in my arms a few minutes later I just talked to him and begged him to be strong and hold on for us as long as he could. I was so desperate he would live but I knew in my heart he was very weak and it was a great struggle for his little lungs to breath and his little heart to keep beating.

Despite everything and to the amazement of the paediatrician our brave and precious son lived on for 70 minutes and got to meet his big brother and sister and his Granny, Granda and Aunt. He fought as hard as he could to live, and passed away peacefully in his Daddy’s arms surrounded by those who loved him most in the world. My prayers had been answered.

I could not have asked God for any greater gift than being Zakk’s Mummy. It was the greatest honour and privilege of my life to carry him and hold him in my arms. I know I will have to live a lifetime on the precious but all too short time I had with him. I know somehow I will get through my grief and life will go on. I know too that there is a reason why we were blessed with such a special and inspirational child, and while his time with us was very short, he has forever changed our lives and the lives of those closest to us.

We spent the next two days with Zakk in hospital by our side, and then we took him home to meet the rest of our family and friends. He stayed with us until the 15th August, his original due date, when we had a very moving funeral service for him at home with a mass in his honour and later we laid his little body to rest.

Nothing could be so precious as the brief time we held Zakk in our arms while he fought for life, but every minute we spent with Zakk over those four days was also precious to us and we will always treasure this time. We got to say goodbye properly to our little boy and he has left behind everlasting memories.

I cannot begin to explain how devastated we are by his passing, but nor would we have missed this journey for the world. He is our inspiration and reason to go on. I know that we will eventually learn to live with this great loss, and until then we will remember how brave he was and how hard he fought to stay with us and these thoughts of him will help us through.

I will never be the person I used to be, Zakk has forever changed me for the better and I believe this change will continue to happen for as long as I live. This journey has renewed my faith in human nature as I have been overwhelmed by the support of all those who travelled this path with us, and he has renewed my faith in God as I know for certain Zakk’s spirit lives on and he is with us always, our precious Angel.

For this child I prayed and the Lord has given me what I asked of him, so now I give him to the Lord…(Samuel 1:27-28)