Extracts especially for CHD-UK 28 Days = 28 Real Life CHD Stories from the book that Shelly is currently writing.
My daughter Hannah was only sixteen years old when she told me she was pregnant. We had hardly recovered from the shock of this discovery when a routine 20 week scan at the local hospital revealed a problem with the baby’s heart. She was referred to ‘Kings College Hospital’ for evaluation and the following is my account of what happened in the days and weeks that followed this earth shattering discovery.
Hannah is seen at the The Dr starts to explain what they have found on the scan. He draws diagrams and shows us pictures but it is still difficult to take in all that he’s saying. I look at Hannah and her eyes have glazed over and I can tell that she lost the conversation after the first sentence. I try hard to compensate by absorbing as much as possible but I too am getting left behind. The baby has a condition called “Double right sided ventricular septum defect”. Basically his arteries are not where they should be. In addition to this he has a large hole in his heart and possible narrowing of one of the arteries. We are told this will involve several surgeries during which they will try to make his heart to as normal as possible. Each of these will carry a significant mortality risk. All the time he is inside Hannah he is fine but as soon as he takes his first breath of air we can expect that his condition will deteriorate. He will turn blue and fail to cope with life outside the womb. This is just the beginning of a sharp learning curve into a world where nothing will ever seem quite the same again.
Tyler is born in our local hospital on 20th October 2005 weighing a whopping 8lb 12oz. Since the initial diagnosis Hannah’s care has been transferred to The Royal Brompton Hospital in London. The doctors there felt it would be safe for her to deliver locally and then attend outpatients in a couple of weeks. Tyler on the other hand has a different plan.
In the delivery suite Hannah’s partner Mark has given Tyler his first feed which he appears to have taken well and is now sleeping peacefully. The pediatrician returns and explains that he needs to take Tyler to the special care baby unit to be checked over and have a heart scan. It feels strange when he has gone and we are all looking around wondering what to do now. It is suggested Hannah gets some rest. Mark stays with her and I decide to go for another walk to pass the time. I am talking to one of my friends in the X-ray department when my mobile phone rings. It is Hannah calling me from the delivery suite. Her words are short and simple but they convey a chilling tone. “Mum can you get back up here”. I don’t even stop to question why. Something is wrong and I have never moved so quickly.
Tyler has been brought back to his mum and dad but the looks on their faces tell me that all is not well. I am told that he needs to be taken up to Brompton as soon as possible. His saturation levels are low and his lips, hands and feet have started to turn blue. The scan has revealed that the damage to his heart is much worse than expected. A special care ambulance team is being assembled for the transfer which must take place as soon as possible. Hannah has to stay at the local hospital overnight and Mark is exhausted so I offer to go up to London to be with the baby.
At the Brompton, Tyler has been taken to one of the rooms there and has been put in a special care cot. He now has drips in his arm and a tube in his nose administrating oxygen. This is a bit of a shock as I don’t expect him to have so much intervention at this stage. He is surrounded by doctors who are performing numerous tests on him and I am forced to stand back while they carry on with these His consultant explains that Tyler’s heart condition is a lot more complicated than they first thought and if it were to be placed on a table it would in fact be unrecognizable as a heart at all. Apparently his saturation levels are very low and this indicates that the blood in his body is not mixing and circulating well. My eyes drift up to the monitor and see that they are hovering somewhere around 60 – 70, I’m told that normally they would be 100. As a result of this Tyler is becoming blue and needs to have a procedure to insert a balloon catheter into his heart. This does not unduly alarm me as I hear of this done on adults all the time at work, but realize that on such a small baby and the additional need for anesthetic will carry its own risks. We are told that they will do this as soon as possible tomorrow
The next morning a doctor is with Tyler when I reach his cot and they are performing another ultrasound scan. I notice that he seems quite swollen around the face and am later told that this is a sign of heart failure. He looks content but I’m told that his condition is deteriorating and that he needs the procedure sooner rather than later. I am learning in frightening reality of the likelihood of a future heart transplant and numerous other surgeries, each carrying significant mortality risks. The future looks grim and I’m staring to feel like I’m on the film set for ‘Casualty’ or something and in a moment someone will shout cut and it will all be part of a fictitious drama
Hannah and Mark arrive at midday and immediately have to sign consent forms. Tyler is too ill to go to It lasts about two and a half hours. By the time we get to see Tyler he is sleeping peacefully. The doctor explains that it’s all gone very well. It is a relief to hear that they are optimistic in the hope that this will be enough to stabilize his condition for the time being at least.
For twenty four hours Tyler appears to do well and is transferred to the ward. The following night Hannah and I are by his cot while Mark is sleeping in parent’s accommodation upstairs. As we sit there I begin to notice that he is starting to breathe a bit heavily and his chest is moving up and down much more than it was before. Hannah calls the nurse over to see him and she agrees that it doesn’t look right and bleeps the on call doctor. He arrives very quickly and after examining Tyler, tells us that this form of breathing is quite common in newborns and comes in cycles. The best thing to do for now is just to keep an eye on him. After about half an hour the nurse returns and asks how he is getting on. Hannah says she thinks he is worse, by now his little chest is really heaving from the effort of breathing. The nurse checks then calls to the doctor who is sitting at the nurse’s station. He examines Tyler again and this time he is starting to look concerned. He calls for blood gases, x-ray’s and E.C.G’s and instructs the nurse to increase the oxygen levels. I scour his face trying to read the situation through his expression, but I can gather little more than the fact that this is no longer a normal newborn breathing cycle
The room is suddenly filled with people and equipment. We are forced to stand away while the professionals get busy pushing machines into place and search for veins to put in yet more needles. All the time Tyler is being worked on his breathing continues to deteriorate and it’s clear he is getting into trouble. We are told he needs to go back to intensive care and Hannah looks really upset. She asks me to go and wake Mark. As I climb the stairs back up to accommodation I try to think how I will explain to him that the son he left peacefully sleeping only a couple of hours ago is now fighting for his life.
The following morning, Tyler is back on the pediatric intensive care unit (PICU) and looks very poorly. His whole body has become swollen from the fluid he is retaining and he is still struggling for breath. His nurse explains that he has not been like this all night but has deteriorated again during the past couple of hours. She is about to put him on an cpap machine which forces air up his nose and into his lungs so he won’t have to work so hard on his breathing. I notice his sats are down into the low fifties and his skin looks very bluish. He is no longer responding to the needles that are still regularly being pushed into him.
Being on the cpap machine makes him look even worse. They have to put a cap on him to keep the tubes in place. There is a band around his face which makes him look more swollen and he makes no attempt to wake once it’s in place. They are giving some medicine to try and open up the hole in the in the heart that was made on Thursday but it does not appear to be working. The doctors say that they will have to operate to put in a shunt to open up his pulmonary artery.
By the evening Tyler is examined once again by another member of the cardiac team. The doctor explains that his condition is getting worse and he urently needs surgery. This is scheduled for first thing tomorrow morning. I question why, if his condition is deteriorating so fast they don’t operate today? He replies that Tyler is too ill. Again I question what will happen if he is still too ill in the morning. The doctor looks at me with a grave expression on his face before replying that they won’t have any choice.
Fear runs through me like ice cold water as the intensity of the moment plunges us all into a world where no one wants to be. One of the doctors produces a consent form that Hannah needs to sign in order that everything is in place for tomorrow. He tells her that there is a chance Tyler will not survive the surgery and writes “death” in the box where it asks them to state any possible risks. She calmly signs the form and waits for the doctor to leave before breaking down and rushing to Tyler crying that she wants to remove the tubes and take him home. Mark holds her tightly and it’s a very emotional moment for everyone.
By evening I am shocked to find his sats are now dipping down to only 29 and that the nurse has said that he is no longer stable. There is a real risk that his brain is being starved of the oxygen it needs so they have started him on a new drug called Prostin which is helping to open his airways. At all times there seems to be someone doing something and it is clear they are all concerned. Stroking the only part of his little cheek left exposed, I tell him we want him with us more than anything in the world, but if this battle is proving to hard to bare, then it’s ok to go to sleep, that I will look after his Mummy an Daddy for him. He does not respond in any way.
The following morning comes and he doesn’t look much different from when we eventually left him last night. The nurse tells us his condition is still not stable. They are already preparing him to go for surgery and none of us are brave enough to ask whether he is well enough as we don’t really want to hear the answer.
Hannah places Tyler onto the waiting trolley and one by one we step forward to say goodbye. Tyler’s other Grandmother places her hand on his chest “fight little man” she whispers gently before stepping away, tears running uncontrollably down her cheeks. I touch his warm cheek and will every ounce of strength and healing power to flow through my body and into his. I push Hannah forward but she pulls away from me. “I won’t say goodbye because I know he’ll be back soon” she insists. Now crying too, she looks at me and asks “he will be ok won’t he mum?” I can’t answer her, and look to the nurse for help but no one can say he will be alright. I tell her I hope so, realizing my words sound hollow and cold, and are not what she wants to hear, and yet all I have to offer her is the truth for no one knows what the next few hours will hold
In all it is around two and a half hours before he is returned to the unit. Dr Magee tells Hannah and Mark that everything went very well and Tyler is now ventilated and sleeping. We had been warned before that he would not look good on return from surgery so it is a massive surprise to see that despite the ventilator and extra tubes he looks much better than he had done before, with his facial coloring significantly improved. It’s like a moment of euphoria, a mini triumph; we have been through the first battle and won it.
There have been more battles and I am sure there are more to come. Tyler had his Glenn procedure in August 2008 and did so well at the time that he was home within eight days. He attends nursery and is a happy, energetic child, so much so you would not know how ill he really is.
More recently he has started showing signs of being ‘blue’ and tires much more easily. His sats have dropped considerably and he has an emergency appointment at the Brompton later this month. We are expecting it is now time for the Fontan procedure which will complete his palliative repair.
No one knows what the future holds for Tyler who also now has a younger brother with chd but knowing Tyler he will continue to show the world what he can do in his usual happy, determined way.
Wrote by Shelly Coombs
To read about Tyler’s brother Josh’s story click here
Shelly Coombs has given CHD-UK permission to use the photographs on this page.