His story: Part two

Birth

On the 4th of November 2014 Idrees graced us with his presence. He arrived 3 weeks before his due date via an emergency c-section. S was incredibly brave and strong throughout the whole pregnancy and moreso during labour. She didn’t complain once and seemed to enjoy it all, including every symptom or contraction she had. We hadn’t realised at the time but through his time in utero, our son gave us so many wins. To even make it to birth here was a blessing in its own right. Some couples yearn all their life to know and feel a baby’s kick in the womb. We bonded so closely with Idrees in his safe haven, once he was out it felt like we had known him a while.

Once the prompt and well-considered decision for the c-section was made, S was taken in first into the operating theatre for the spinal injection and I was asked to wait in a small room. I remember thinking at that moment that the selfish life that I had lived to that point was officially done. I realised that I would very soon have a new purpose in life and that was to be as good a role model for my son and make mine and my family’s time on this planet count.

The operation took only a couple of minutes from start to baby’s birth. When Idrees came out we heard a roar of a cry. Instantly Sanam and I were in tears with joy. Even though I have always wanted to be a dad, I never felt entitled enough to think I would be lucky enough to hear my son’s cry. I will never forget that moment; it will always be the truly best moment in my life.

We had a special care team immediately on hand to administer the prostaglandin needed to keep the hole in Idress’ heart open to keep him alive. Although he was very stable and doing well at birth, he was quickly taken to the SCBU as all CHD babies need to be constantly monitored and stablised. As much as I wanted to follow my son, I knew it was important to not get in the doctors way and it was more important to give them the space so they can administer the relevant apparatus to help our son get comfortable and more importantly, stay alive.

I stayed with S in the post recovery room and I remember saying that I could die happily tonight. It is something that I have never said in my life but I genuinely meant it. A living, breathing baby boy was welcomed into the world as my son and would forever be ours to call our own in this world. From a selfish perspective, I felt I had experienced all I wanted in life.

After checking up on Idrees, I remember going to sleep with a big smile on my face. There was a baby on this planet that was ours. He was made from us and looked like us. Regardless of how many chambers his heart had, he was perfect to us and always would be.

Alder hey Hospital

Idrees was transferred to Alder hey Childrens Hospital within 10 hours of being born.

One of the first overriding thoughts when you walk in to Alderhey is on how amazing these children are. Everywhere around in the hospital, children battle all sorts of very serious conditions, from cancer, brain conditions, heart issues, spinal defects. All of these children seem to just get on with their lives as best as they can. They just don’t complain or feel sorry for themselves and everywhere you turn you see sick babies or children with a smile on their face.

As someone who has never had any serious health problems thus far, I felt disgusted with myself that I complain about half the things I do or have done in my life. These children are more inspirational than anyone I have met so far. Their strength to live and continue having a smile on their face with such serious conditions was nothing short of amazing.

As a dad of a baby that is in intensive care and as a husband to a wife that has had major abdominal surgery, I found that my time was juggled between two hospitals. On one hand I wanted to be there with my wife as she was recovering and provide her updates on how our son is doing whilst wanting to constantly be there side by side with my son. In that situation, I tried never to make it about myself as it was ultimately my wife that had to go through surgery and it was my son that was fighting his condition. I spent my time during those days where it felt right, usually splitting time evenly and where possible, ensuring S was permitted and comfortable enough to spend time with the baby too.

Naturally, I spent a significant amount of my time with Idrees. Every morning, the first 5 minutes were very tough. Seeing your child with tubes on every limb and a breathing tube through his mouth was hard. Every morning when I first saw him I would tear up again feeling helpless. Every day after those 5 minutes I would walk out of the ward to compose myself. I would compose myself at the “wall of stars” just at the entrance of the PICU. The wall had messages of gratitude written by parents celebrating their deceased child’s life. It was these words that really helped me every day to put my life and my son’s life in context. My son wasn’t the only child having to face a fight, and I wasn’t the only father that has ever felt helpless; every child and every parent described on that wall has been through this and naturally, others will too in the future.

Once composed, I would walk in to the ward and stroke my son’s fingers and hair. He had incredibly soft fingers and the wave on his hair was just like mine. I tried my best to give him words of encouragement every day. I would tell him how incredibly proud of him I was and how much I loved him. I reminded him and myself how much he had taught me. I told him how he had taught me it was important to be a fighter and to never complain; he taught me that I shouldn’t waste my healthy body and should use it to aid the world. I told him that he was everything in life to me and that not only is he enough for me, but he surpassed every expectation of life I had.

It was Idrees’s third day of life we had the conversation with the surgical team who had been assessing him all week, to determine if they would recommend putting him forward for the surgery he needed to have a chance at life. We always knew that every baby is unique and every baby will be assessed on their own merits. Collectively, they confirmed that due to some further complications that arose, they would not recommend the potentially invasive surgery. We decided it would not be wise to put our son through the surgery. S and I completely respected the surgical teams experience and we could see that they would not make this suggestion unless they had explored all the potential other avenues. I could see in our cardiologist’s and surgeon’s eyes that it was with much regret and internal discussion that they had come to this conclusion. It was no longer about our ego or selfish desires, it was about what was best for our son.

S and I quickly made peace with the news and we knew we are doing this for our son. We knew the next stage was palliative care. Deep down as parents, we just knew Idrees would not have long to go.

The staff at Alderhey were amazing. Words can’t do justice to how their compassion and care for Idrees helped us through to his final moments. Knowing our son was loved and cared for every moment from when he came into this world gave us so much solace then and continues to do so till now. They gave us our own room so that we could privately have one last night with our son still alive. We finally got to hold Idrees. We got to kiss him, cuddle him and take photos and videos that will stay with us for a lifetime.

Idrees’s fifth and final day with us quickly arrived. As part of his palliative care, his tubes were removed. The only tube remaining was the one providing him with pain relief to ensure he was completely comfortable as possible. Both S and I got to hold our little champ in our arms as he started to make his transition from this world.

This was the part I selfishly feared since his diagnosis. However, in the moment as Idrees started to pass, it felt perfect. The wee man was surrounded by his parents, held by his parents. There were no tears, with both parents kissing him and giving him constant words of love and encouragement. He was reminded how much of an inspiration he is and will be for us. He was reminded how much we will always love him and how he gave us everything and more in life than we could have ever hoped for.

Around 3:30pm on that Saturday 8^th November, Idrees left us, for what we and any parent hopes is a far better world. He was no longer bound by Earth’s gravity nor will he feel any tubes or apparatus or pain again.

That night I bathed him and dressed him for the first and last time. I always thought I would not be able to look at or hold my deceased child. When the time actually came, it felt completely natural. I didn’t want to let go of him.

The next day I carried him and stepped in to his grave and I laid him down in his resting place. I didn’t want to leave him but I knew it was the best for him to be at peace. I held him for the last time and told him I love him

Throughout the last few months and all the way up until we laid Idrees to rest, I was lucky to have such a great network around me who each made it easier in many different ways. It goes to show that if you have good people around you, you shouldn’t have to go through anything on your own.

Life now

Now that Idrees has a resting place, I enjoy going to go see him at the cemetery. He is buried, amongst many other babies and children, in a cemetery that is very serene and beautiful. It humbles me every time I go to see him. If there aren’t people around me, I always try to talk to him and try to banter with him about my week and possibly what he is up to. I even ask him if he knows the answer to life and if there’s any chance he can put in a good word up there so we can know it too.

If I’m in a serious mood I always discuss what I wanted to do with him. I joke with him how we could have played football, or constantly harassed his mother by teasing her or what he would have been like at school or graduation. At this stage, I have to remind myself that I shouldn’t let these selfish requirements get the better of me. These are things I wanted, not what my son wanted. The only thing a child wants is a lack of pain, sustenance and love. Everyday his heart was beating we tried to give him that, until his last breath. I take some solace from the fact that S and I were around and held him whilst he made his transition from this world. Not every person is that lucky and I don’t know if I will be that lucky when it is my time to go.

Every day I consider myself one of the luckiest people on the planet. I always thank the big guy for sending us our son for the time we had him. Both S and I feel we have acquired something in life as opposed to lost something.

He wasn’t taken too early or too late. He lived for exactly how long he was supposed to. Saying anything otherwise, would imply that he wasn’t enough. The truth is he was more than enough. He was everything we wanted. Whilst we are relatively young, he taught us invaluable lessons on not taking life for granted, on making the most of every opportunity and experience and most importantly, on working on being grateful and good people.

The whole process has taught me that life is not about how long you live, but it is more about what your impact has been. Idrees has encouraged a change of viewpoint amongst his cousins who have independently raised money and awareness of his condition. This blog, started by S, should raise some awareness and perhaps even help those dealing with the loss of their child. I have a place in the London Marathon to raise money for British Heart Foundation. This is all because of our little boy.

As a father, I would consider my life a failure if I do not learn from my son and if I don’t keep his memory alive. After all, I cannot fixate around that he was with us for 5 days as we all have to go one day. I won’t get to change his nappies or take him to school, but I can help my son’s cause so that his life will ultimately help others now and in the future.

Going back to Einstein’s quote “There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle”. Having held my son, this has galvanised my belief in miracles. There are virtually infinite reasons to wake up every day and enjoy life and its miracles. Idrees was and continues to be a miracle that lends purpose to my life.