Over the past 21 months, I have had the eye opening experience of being a parent to a child with a chronic medical condition. We have spent vast amounts of time as hospital inpatients, and as her voice I quickly learned how to advocate, speak up, protect and cocoon her from the potentially traumatic effects of being a “hospital baby.”
Together we have endured countless cannula placements, blood tests, surgeries, x rays, ultrasounds, lumber punctures and so much more. But through it all I have done my best to protect her, and though she has had to go through some very horrible experiences, she is (thankfully) always quick to bounce back.
In this article I want to share the lessons I have learned during the past two years, lessons which have saved our family and our daughter from unnecessary trauma and helped to give her the support she needed to come out of each hospital admission relatively untraumatised. These lessons can be transferred into any stressful situation, not just in a hospital environment, but whenever a child has to go through something which could potentially be very upsetting.
Stay With Your Child
During our time in the neonatal ward, this was something we had to fight tooth and nail to achieve. As parents, we were not always welcome there and when blood tests or other unpleasant procedures needed to be done, we were invited (asked) to go and get a cup of tea and leave them to it. We always declined.
I completely see why some parents might fall into this trap. It is horrific to watch a stranger poke needles into your baby, and it takes all your strength not to pick them up and walk out with them. But as hard as it is for you to watch and hear your baby or child cry, imagine how terrifying it is for the child. As adults, we have the ability to reason. We know why it has to be done. We can get through it because there is no choice in the matter.
Babies and children don’t have this luxury. They have no idea why they have been woken to find a needle being poked into them. They don’t know why they are surrounded by mean strangers wearing smelly latex gloves and simpering smiles. You are their one comfort.
I was often told by the nurses how strong I was to stay. And I always told them, it is nothing to do with being strong.
My insides were a mess of aching, burning pain as I watch them hurt her. But it would not be fair to leave her. She needed me, and my discomfort was nothing compared to her need for comfort and safety.
Talk softly, explain what’s happening, sing, stroke, do whatever you can. And the moment it is over, take them in your arms and let them know it’s finished, they are safe, they can rest easy again.
I know it is not always possible to stay with your child around the clock, though if you have any relatives that can step in in your absence, please take them up on this. But if you must leave them in the care of the nurses, one great tip I have seen other parents utilise is to place a large sign above your baby’s/child’s bed saying please do not touch them without a parent present. You can adapt this to say, no blood tests without mummy and daddy present, no invasive procedures without a parent present, or whatever you need.
I have spent a lot of time on the children’s wards and time and time again I have seen both the parents and the nurses use the tactic of lying to the child.
If there are five more steps to go, please please please do your child a favour and be honest. Tell them the truth. Don’t say just one more if you don’t mean it. That sort of dishonesty, especially from a parent can confuse and terrify a child in an already scary situation.
If there are two spoonfuls of medicine, tell them that. If it’s ten breaths on the inhaler, say it. Count down together. Sing, distract, discuss. But don’t lie. It may work this time, but it will quickly disintegrate any trust your child has in you, and will make things so much more difficult next time. Be in it together, and let them know they can rely on you to be honest, even when it’s not what they want to hear.
Leave the Painful Things to the Professionals
When it comes to peripheral blood tests and cannulas, I always hold my daughter while the doctors do it. Now she is big, this can be quite hard to do when she gets distressed. But I hold as lovingly and gently as I can, I do everything in my power to make her comfortable and I find as many things as possible to distract her.
Tip – Try blowing bubbles, they are a wonderful distraction.
The needles however, I leave entirely up to the doctors. I have not sought out training for this as I do not want to be the one to cause her pain. (I know for diabetes patients, among others, this is not always a possibility). Over the past two years she has developed a strong distrust of the doctors and nurses, and with good reason, but she never holds it against me and she never holds a grudge. The moment they leave the room, she is happy and relaxed again. She knows mummy won’t hurt her and I will do my best to keep things that way. It is awful to hold down your child as a stranger hurts them. But my role is to stay calm, reassure her, talk her through what is happening and comfort her when it is over.
Question Everything – And Don’t Be Afraid to Say No
In a hospital environment, there are many procedures that are done simply due to standard practice. Sometimes these are vital to the well-being of your child. Other times, they are completely unnecessary. I quickly learned to distinguish between the two.
Yes, it can be very awkward insisting a doctor come and explain their reasoning for ordering each and every test, but as parents we need to shelve our personal discomfort for the benefit of our child. I would say we manage to avoid at least half, if not two thirds of the “interferences” in hospital simply by asking “Is it necessary and if so, tell me why?” Sometimes blood tests can be grouped together. Sometimes surgeries can be combined into one theatre visit rather than two. Some tests can be avoided completely.
As I said above, my daughter has developed a strong distrust in hospital staff, lovely as they are to her. She hates to have her temperature taken and point blank refuses to have her heart rate monitored. She really just does not feel comfortable with them touching her at all. As her mother, I have learned to recognise the signs of sepsis (a frequent reason for admission for us) and as such I can tell just by touch, sound and sight when she has a fever, when she has a high heart rate and when she is struggling.
In these cases I permit the temperature and heart rate checks, though I ask the nurse to stand back while I do them myself so as not to cause her upset. But when we are admitted for a technical issue, or perhaps a surgery when she is otherwise clearly well, I refuse all checks. To do them we would have to hold her down and force her to keep the monitor on, as she screams and protests. As unpopular as refusing these standard procedures sometimes makes me with the staff, I won’t put her through an unnecessary trauma.
If you find yourself in a similar situation, ask yourself (and the doctors) what will happen if we don’t do it? What is the risk? Is it necessary?
If the answer is no, don’t do it.
Adapt Your Environment
My last tip is to make your environment familiar and comfortable for your child. If you know they will only sleep with you, inform the nurses that you need a bed with full sides due to co-sleeping. When I was first admitted with my newborn, we were strongly discouraged from doing this. I couldn’t bear the idea of leaving her in the cage like hospital cots, and for several months we ended up co-sleeping in the low, parents bed, using the cot they provided to keep our bags in!
I believe that co-sleeping helps to give her so much security in what can be a very unstable environment. It offers her a protection like no other, and a deep sense of safety. I brought in my ergo and in the early days, my sleepy (boba) wrap, and took her for walks through and outside the hospital, wheeling the drip stand beside me. As she got older, I brought in toys from home and soft blankets to place of the floor, enabling her to play and explore as she would in her own home. I made her environment as much of a “yes” environment as I could manage, often coming up with creative solutions that enabled her to feel free, even when she was tethered to a drip.
I was once told that she would likely be delayed in all areas of development due to spending so much of her early life in hospital. I believe this would be true if we left her alone in a cot with no company but the flashing toys and television to amuse her. But we never did that. We adapted, and we parented in just the same way we would have at home. And for the record, she is smart as a whip and developing wonderfully.
So if you do find yourself in the unpleasant position of having to go through medical procedures with your child, please don’t panic that they will be forever traumatised by the event. By remaining calm, being honest and staying with them whenever possible, you will minimise any trauma they take on. Children are far more resilient than we sometimes give them credit for, and if the majority of their life is secure, loving and safe, these small necessary occurrences will not harm them long term. You however may need a long hard cry and a deep glass of wine when you get home!
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