Double Diagnosis

For me, the minute you conceive the emotions of guilt and anxiety become heightened. The world is suddenly full of dangers you could not possibly have foreseen and life changes. No longer do you simply need to take care of yourself. Guilt is no longer consigned to those mornings you awake with a hangover and the events of the previous night slowly come filtering back in. (we’ve all been there, right?) Now there is a new channel for guilt and anxiety, a new reason for these emotions to thrive and overwhelm you. But feelings these things shows you care and encourages you, as a parent, to do the best job you can for your children.
But when you child gets diagnosed with a life changing and life limiting condition what happens then? Anxiety and guilt take on a whole new meaning. And into the mix comes anger, depression and, so I am told, eventually acceptance.
This year has been a very challenging one for me as a mother. Last December my middle child was diagnosed with a collapsed lung after years of poor health and doctors appointments. I have written about the diagnosis of and the events that resulted in him having to have two thirds of his right lung surgically removed. The doctors at this point were still unsure as to what has caused the permanent damage to his lung, it could’ve been a virus that settled in the thick mucus his body repeatedly produced, in which case the surgery would permanently correct this, or worse case scenario his symptoms would return after he recovered from the operation and investigations would have to step up a notch to prevent any more of his lungs becoming damaged. No more of his lungs can be removed, and a lung transplant would be the only option.
Sadly it was soon apparent that the symptoms were not going away. His wet cough and excessive mucus were ever present and he repeatedly had high temperatures. On consultation it was quickly decided that he would, from now on, be treated as a child suffering from the genetic condition Primary Ciliary Dyskinesia. It’s a condition in the same family as Cystic Fibrosis, however not as serious, and is where the cilia (tiny hairs throughout the body responsible for removing mucus from our airways) do not beat in time, or even at all, and are therefore ineffective. As with my son, one of the worst case scenarios is that this causes mucus to pool in the lungs and be a breeding ground for bacteria resulting in the permanent damage of the lungs.
It is a lifelong chronic condition that requires daily physiotherapy; frequent x-rays and potential IV antibiotic and hospital stays due to recurrent and potentially dangerous infections. As well as suffering from hearing difficulties and potential infertility. You can read more about the condition here: wwwpcdsupport.org.uk.
During this year my youngest children, now three, has also noticeably been displaying similar symptoms and even though there is a one in four chance per pregnancy (both parents need to be carriers of the defective gene for it to be passed on) there is still a high chance that siblings can also be affected. My youngest child had had recent chest infections as a newborn and also had a permanent wet cough. We were sent very quickly to Southampton hospital (an amazing team work there and focus on PCD) and sadly initial test have shown that he too suffers, and so he is also being treated as a child with PCD.
And to be honest, since that day in Southampton my anxiety and guilt have hit the roof and I am struggling to come to terms with their diagnosis. This is life changing and potentially life threatening and the responsibility of keeping their lungs clear of mucus and healthy primarily falls to me. I am the one who has to encourage/make them to do their daily physiotherapy, sometimes several times a day, I am the one who has to monitor their temperatures and gauge whether they need to be rushed into hospital for a chest x-ray and sputum test to pre-empt a life threatening infection (and even a common cold could be that infection for them.) I have to make sure I constantly am on top of their antibiotic prescriptions and the paperwork involved is immense…hospital appointments, DLA forms, and so many more. I lie awake at night and hear them both coughing as their bodies try desperately to get rid of the mucus that builds in them everyday and wonder how long before our next infection or hospital stay, and will this be the one where my middle son needs a transplant because his lungs have been completely destroyed by the disease.
I feel guilty everyday that I didn’t fight harder to have him x-rayed when his cough and mucus first began to take its toll on his already malnourished and fragile body. I feel guilty for passing this illness onto them even though I didn’t even know it existed or I carried the defective gene. I feel guilty that their lives will be dominated by physio and staying healthy and nasty tests and hospital stays. And I’m anxious every minute of everyday about their health. Am become obsessed with taking their temperature and, in all honesty, catastrophising a bit about it all. I feel like I am grieving for the healthy children I thought I had and learning to accept that I am now the mother of children with a chronic illness.
At no point do I ever see myself accepting this. It seems too cruel and unfair.
I know there will be a period of adjustment as we all learn to live with this. And I know we will all get there, but for now it is too raw and too upsetting. It hurts.
And sadly anxiety and guilt are in control.
And so I have to ask, are there any mums out there who have been through something similar who can offer me some advice? I would love to hear from you xx

4 thoughts on “Double Diagnosis

  1. Oh my gosh, so much for you to have to cope with.
    We went through a period of Ethan needing regular hospitalization, daily physiotherapy, chest xrays and seemingly endless amounts of drugs to maintain clear airway and lungs; whilst his condition wasn’t as life changing as that of your sons, like you I went through a period of denial and guilt.

    As a parent we do feel like we should be able to protect our children and the guilt is immense when there is nothing we can do to ease their suffering, I found talking to a therapist helped me come to terms with the roller coaster of emotions I experienced.

    You must give yourself time to grieve, as that is truly what this sort of thing feels like. It’s okay to be angry, upset and scared; but always remember it is not your fault. You are amazing and coping so very well during such difficult times.

  2. Ann Hibbitt says:

    When Chris my eldest was 6 months old I took him to routine baby clinic. That was the day our life changed. The nurse weighed him, the Heath visitor checked him over, I was told to just wait a minute or two in the waiting room. Her exact words were “Just sit for a minute Mrs Hibbitt I just need to speak to the Doctor, DONT WORRY I’M SURE HE’S NOT COMPLETELY BLIND” To be honest the rest of the day was a complete blurr. The next day we headed to eye hospital and our journey of monthly appointments began. As he got older the appointments changed to every other month and then eventually when he was about to start school 6 monthly. We’ve been through battles to get him into the schools we thought were right for him and as for getting his statement! Well that involved an 18 month wait and an 8 year old Chris writing to the Prime minster. But he did go to the schools that were right for him and with support passed GCSEs and A levels. Even going to New York in sixth form, a time that left me a nervous reck!
    Right from that first day I had questions and guilt lots of guilt. What had I done wrong during pregnancy? It must be my fault. I’m a bad mum. Why hadn’t I noticed before the Health visitor?
    We’ve never been given an answer as to why he is visually impaired. But he is our Chris a strong independent young man who goes out to work every day on the bus.
    Yes I still worry every single day. Why is he late home from work? What has happened to him?
    I guess that’s all part of being a parent.

    Stay strong Jenny, you are an amazing mum. Lot of hugs and love. Ann H xxxx

  3. Emma Norris says:

    Hi Jenny. My situation is not exactly the same, but I recognise a lot of what you say in my experiences. My daughter was diagnosed with juvenile arthritis at 22 months. My first thought when I heard the words were “I did this to her, I grew her”! And I am a clinical psychologist, so I knew the ton of theory about parental guilt, knew it was not really my fault in words, but in my heart I am of course so very human. Guilt and anxiety are common, natural responses to a terrible situation. My daughter has also been diagnosed with uveitis, so she risks damage to her joints and to her eyesight. I had six months of therapy on the NHS because I was anxious all the time. It really helped. Don’t feel bad about having anxiety and guilt, that’s where we all start. Just look for YOUR way forward. The best advice I had from my therapist was to focus on Molly being Molly, not a child with arthritis. But I can’t give you advice for such a difficult situation because it’s so complex. How you get to a less anxious place will take time and lots of support from other people. I was overwhelmed with understanding what the diagnosis meant, all the appointments and letters, the hospital apps and checks, having to force my baby to do things like blood tests and x-rays, the steroid injections, the general anaesthetics, trying to do physio, horrible medications with nasty side effects etc. and I am lucky that we have long periods when my girl is well and we get to breathe and recover. You are under enormous strain. Be kind to you, because you matter, and your children have strengths and wonderful personalities and all the delightful things that a child brings to our lives (alongside the never ending housework!). P.s. When it all got a bit much we planned our wedding so we were forced to focus on something positive and beautiful and it helped me no end. Listen to everyone’s advice and then listen to yourself telling you what things will help you, and what feels manageable. Big hugs.

  4. What a traumatic time for you and your family. I understand the guilt that comes from passing on genetic conditions to your children. My own ‘defect’ is not in anyway as serious and life threstening as what your sons have, sonim not trying to compare myself but I do feel like I messed up, by passing on my faults to my son.
    I think you need to give yourself time.a You ARE grieving for the child you thoight you had, and the life you thought they would have. Be kind to yourself xx

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