Hospital Life – Worried about your child’s diagnosis

Irrespective of the age of your child, getting a diagnosis for your child’s illness brings closure to the family’s search for the cause of your child’s failing health. It also gives a sense of direction in terms of the treatment plan and course of action for the child. The part we least expect is the overwhelming feeling that the reality of a child’s diagnosis can bring to the family. It can shake your world and turn it upside down. Unfortunately, with each passing day, the ripples of the effect of your child’s new unwell status can get scarier if not handled properly. The reality is that things may never be the same again for the family but that feeling is shared across families. Parents and carers deal with this feeling differently for It feels in a way like a loss as you grieve for the vibrant child you used to have. The one you never had to worry about.

All these feelings depend on the implication of the diagnosis for your child in particular. Sometimes it may mean that your child will make a full recovery as in this case the diagnosis provides a sense of direction for adequate treatment. However, for other parents, the diagnosis may be the start of a brand new chapter of life for their child and indeed the rest of the family. For these parents, my opinion is that the experience shared by another parent can really shine a ray of light to help dispel the feeling of sadness, confusion and loss.

To parents in this position, the doctors seem to all have sugar coated tongues and so they tend to shut down. The doctors seem to give us textbook advice not real practical advice. The good news is that this feeling is quite normal. In fact most parents start off feeling that way. It’s called dealing with the news and that’s never a bad thing. Everyone deals with the news about their child being diagnosed with an illness differently and it has to be respected. What i have done is to list below some tips that may be useful and hopefully helpful.

(1)Come to terms quickly – Yes, I find this to be one of the most useful tips. Please listen to the doctors carefully and try to understand the meaning of the diagnosis. It is quite normal to wish that it all goes away and sometimes it does with time. However, by accepting the diagnosis initially, you will spend less time denying this reality. The truth is that many children can be very poorly even though they seem full of energy and bubbly. Some other children develop very severe and complex needs as a result of their illness. Some illnesses can be life threatening or life limiting with some children experiencing a mixture of both. No one wishes for this, but the bad news is that it doesn’t stop them from happening. So the diagnosis hits every parent like a ton of bricks. Just focus on your child and you will see that things will get easier for you. If you start to allow yourself listen to what your health professionals mean then you will gain knowledge that will empower you through the new journey with your child. This is not to say that by understanding fully, your child’s diagnosis will disappear (although it is also a possibility). The secret is to give yourself the chance to know what you are dealing with.

(2)Ask questions – I find that with proper understanding come proper questioning. These questions will be the kind  that will help make a difference to you and your child. Don’t be too hard on yourself by feeling that your questions might be irrelevant, they are never irrelevant. If they bother you, then they are not only important but also have to be clarified. So ask away. Doctors and health care professionals expect to be asked questions so don’t also worry that you may be taking up their valuable time. Part of their time is made more valuable by answering your questions. Questions help give more clarity and confidence. I cannot overemphasize their importance. If you forget to ask some questions, write them down for when you next contact the healthcare professionals. It may be during your next visit or over the telephone.

(3)Stand by your child – This is really key. Sometimes the enormity of the diagnosis means that you spend less time with the child “dealing with the news”. That is fine too especially if it helps you cope. But remember that your child needs you too. Depending on their age and level of communication, they too might be experiencing confusion and fear. One interesting thing about children is that even when you say nothing to them, by being in hospital, they can tell that something is wrong. Don’t forget also that your actions ( body language, secret chats with doctors, whispers on the phone) speak other than words. Try to fill their blank spaces so they don’t fill it up with fearful and confusing thoughts. For younger children, especially babies they may be less demanding of verbal attention or presence. However, you may also be surprised that being around the child may be comforting. Depending on the diagnosis, you may find that spending time with your child (no matter the age), is all that you have thus making the precious time together very valuable.

(4)Decide what you tell the child – One good thing about being a parent is that you are responsible for the child. You can control how you break the news to your child. Without falsifying the facts about the illness, you can still decide how much information your child can handle at a time. Try not to hide the facts or deceive your child. The transparency might make your life easier. For some children with good understanding and adequate communication, some hospitals require their signature and consent  to be given alongside that of their parents when undertaking  some procedures and drug administration. So making sure they have even the faintest fact is best.

(5)Keep an open mind – Your child’s diagnosis may throw you into the world of parental medicines. Some of the care and management of your child may require your active participation for success. Some parents have learnt how to pass NG(naso-gastric) tubes for their children, some handle feeds through gastrostomy PEGs and buttons. Other parents handle tracheostomy devices, use SATS monitors and Oxygen at home. In fact the list is endless. What to bear in mind is that they were all novices like you are now at the start. No parent was born with these skills but as a parent, you do what you have to do for your child. Just be open to learning all you can. Keep an open mind. It’s not too difficult after all doctors and nurses learnt to do all they do too. If they can do it, you can too! We are all human. Initially, it may be difficult to learn, that’s normal too. It is hard enough being a parent and even harder being a parent carer. Just make sure you voice your opinion to those caring for your child and training you. It will always be taught at your pace. Always speak out to reduce the feeling of pressure. These skills come with time and practice. An open mind just helps you feel calmer. It is not compulsory to learn if you are not ready or don’t want to. It is just that learning may buy you some time away from the hospital and give you some independence and sense of control.

(6)Don’t be too alarmed by devices – Getting diagnosed for some families means that new devices may be needed to improve the quality of life of their children. Sometimes port-a-caths are fitted to help deliver blood, fluids, nutrients, and blood products intravenously. For other children, gastrostomy PEGs or buttons are used to deliver milk into the stomach. Other children have tracheostomy (to help with breathing), pacemakers (heart), wheelchairs and so many different types of devices. They can look elaborate sometimes. Even when they don’t, knowing they are there can be overwhelming for a parent. This is quite a normal feeling. Many of the parents you see may use them in a way that appears to be second nature. But that’s because they have had time to get used to these devices. Don’t be too hard on yourself. You are definitely not alone with that feeling. There is always a first time and you need to give yourself time to crawl before you can run or walk. Just accept them for what they are without over thinking or overanalysing them. They are simply there to help your child. Focus on that thought. Be reassured that doctors do not take the decision to fit the devices in very lightly.

(7)Ask for support – One big part of dealing with your child’s diagnosis will be achieved with the right support. At the time of diagnosis this may be the least in your priorities. However, most parents realise with hindsight the importance of having adequate support in place. Within the community, support exists to help families cope with the complex health needs of their children. Even less complex needs are supported too. GPs and health visitors are good sign posters for help . Your child might need referral to the community nurses as well.  Some teams are set up called “complex health teams” in some communities. You can access them via hospitals, social services or on their own through your council. You may also need support from your speech and language therapists, physiotherapist, wheel chair service, occupational therapist, portage workers and so on. Ask about how to access as many as will be useful to your child. If you are confused about what support you need, speak to your child’s nurse in charge, doctor or social worker ( attached to the ward).

(8)Join a parent support group – It is always very comforting to hear from and share experiences with other parents coping with their children’s illnesses. Some parents form support groups on social media like facebook, even some hospitals moderate some of them (without giving clinical advice). Your local carers support group can help. If you are in the UK, the Carers UK provide an online parent support and advice system. Contact a family ( also put you in touch with other families who may have the same diagnosis amongst many.

What are your strategies for dealing with the diagnosis of your child? Do you have a moment to share from your wealth of knowledge and experience? We are really keen to hear from you.

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