Just say no! I’m not willing for unnecessary tests to be preformed on my child. I’m unwilling that every medical student will touch him. There’s a limit to how many time he can be pricked repeatedly without comfort or pain relief. Sometimes advocating for your children during medical treatment is necessary. The medical staff at the E.R. often forgets that just a moment ago another staff member examined him. They forget they have a child in front of them, and not just a medical problem that needs to be solved.
I stood over the body of my two-week-old baby, and looked the doctor in the eye. Just don’t. We’re done for now!
It’s not easy being a parent of a child with special needs. It’s even less easy to parent four children, when three of them have special needs.
I am not suggesting to attack medical staff. The goal of this post is to explain to parents, how to work with medical staff, and when medical actions should be stopped, to allow your children to cope with painful or unpleasant processes, to prevent trauma, and to increase cooperation. I hope that this will help parents detect when advocating for your children will get them better treatment.
Advocating for your children during medical treatment
Quite a few times, I find myself stopping my colleagues from the medical staff, from performing actions which are necessary, but are also too difficult to bear for my children. This time it really stood out.
In addition to the fact that we just had a baby, and that the pregnancy and childbirth didn’t go smoothly, this time we ran into more unexpected medical problems that required quite a few invasive tests for our tiny baby.
It is difficult to take blood from a baby, but the strain on the health system means, among other things, that a pre-Corona-used baby test tube, which costs about double the cost of a regular test tube, is not currently in stock. That led to many tests that were disqualified. The poor baby had to give blood again and again several times, to extract the required amount. Exhausted crews and faces masks also make it difficult for staff to physically see the tiny hand and stab the right spot. Every blood test turned into a terrible nightmare. Each time I was offered to leave the room, and each time I refused. When my kid suffers, he needs his mother.
During the hospitalization, one of the interns was required to take an additional EKG test. . After failing to do so several times, I stopped him and said, “enough!” “I refuse to take the test any further!” “He’s going to need a heart-echo test anyway, so why torture the baby?” “And the same test was already taken in the E.R.” As a medical team sometimes we’re torn from both directions. On the one hand, you understand the staff and want to let them do their job, but on the other hand, advocating for your children during treatment may feel like you are getting in the way, but it is necessary for the physical and emotional safety of your non-verbal child.
Cluster medical procedures
I explained to that same intern that it is customary to cluster procedures. If we need, for example, to give medications to a baby, we will schedule the bathing and diaper change for that time.
That day, the same intern entered the room at least five times, woke, moved and examined the baby and disturbed him. When it was time for the EKG test, The baby was no longer able to bear the disturbance.
Medical staff treatment
So little time is devoted to educating medical staff about addressing special needs populations, and patient care etiquette in general. In fact, in all my years of study as a nurse, I can count on both hands the number of hours devoted to it. The staff, which is stressed out as it is, is busy trying to work efficiently. Sometimes they need to be stopped and told how treatment should be provided to our children. I often find myself angry about the subject, even when I’m wearing a uniform. But in an era, when our minds are on the computer, and efficiency is above all else, sometimes you have to remind them: “Hey, remember I need you to explain to me,” “I demand you don’t do things without my consent,” “Remember to ask first, and see if I agree too!” And you really have to remember, when you take care of another, whose body is his. Our kids often don’t know how make these demands, and need us to make them instead. Your children often need to be represented during treatment.
For the first time in my life, I stood scared in front of a doctor, and asked for an explanation of why they wanted to perform certain actions on my baby. When it comes to your child, sometimes you’re just his parent. Our education, and logic are no longer with us, and we are on a single mission: to protect our child and make sure he just lives. That he keeps breathing a little longer. In defense of the doctor who was standing in front of me, she explained quite patiently. I haven’t been comforted by the protocols (which I’ve been reciting in my sleep for years), and the fact that I know the answer by heart, even if I was awoken after a battle, in which I hadn’t slept in in a month, when it came to my private child – I just didn’t want to. I stood in the room and tried to cooperate in tears.
Quite a few times, we, the medical and nursing staff, wear uniforms and our faces change. We have a desire to reach everyone, without mistakes, cover ourselves legally and document everything. We are required to meet administrative tasks, and anticipate problems. The staffs are overloaded, and instead of a nurse treating a few patients, sometimes it’s one nurse for up to 20 patients. The load is enormous. It’s not the staff’s fault. When a doctor is split on both patients from the E.R. and on the ward at night, it’s only a matter of time before something happens. This is not an excuse of course, but it is part of the explanation for inadequate caregiver manners.
Take care of your child first, but remember to be polite.
Firmly but graciously. Explain that you appreciate the staff’s work, but that’s your limit. For example, inserting an IV line: If a staff member twice tried to insert an IV line and failed, demand a break to comfort the child. It’s reasonable and acceptable. Say, we’ll try a in few more minutes again.
Help the team as best you can
Try to help the teams run the tests. This will make it easier for you and the child. If you need to hold the child and calm him down, do it.
Be aware that a parent’s presence makes it difficult for emotional staff to function
It’s really not your problem, but be aware: if it’s a examination, which is already stressful and difficult to do, medical teams are human beings too. Make it easy for them if possible and say it out loud, too. “I know this is a problematic test. Let’s get through it together.” When the staff feels trusted, their performance improves.
Require pain relief when necessary
No man should suffer pain when it is not necessary. Ask to apply an anesthetic ointment to the skin before blood tests, or painkillers before a painful test, and even sedation when necessary. These are acceptable requests.
Demand an explanation of medical procedures and come prepared for preknown procedures
If you are not in an emergency situation, ask to be explained (if possible): why, what, and in what form the procedures are done. If you think they are unnecessary, politely ask for an explanation of their necessity. It is your full right and duty of staff to provide it.
Keep in mind that during an emergency, the crew’s ability to explain what’s going on is limited. Sometimes they’ll send you to get an explanation separately from the child.
Explain the need to detail the course of action in order to prepare your child and yourself for cooperation.
Know your own emotional and physical limits.
If you pass out at the sight of blood, don’t be in the room when they draw your child’s blood.
If you are unwilling to let them draw blood, without an anesthetic ointment, and this is not a life-or-death event, stand up for your right. Try to come prepared with such ointment, for places that might not carry it.
Give some thought to what you’re willing or unwilling to do to your children in the situation you’re in, and explain it clearly but politely to the staff.
I feel it is important to note that all the medical staffs I faced were professional, and tried very hard to be pleasant. It just doesn’t always happen. In addition, when there is a rolling event, when you are in a situation where one medical event gets complicated or is followed by another, parents like us sometimes meet the staff too tired and nervous to be nice or polite. It’s not fair twice. Once for the new staff members, who are not to blame. A second time for us, we don’t deserve to deal with such a big load and with improper supports.
We have to try to gather emotional resources, or at the very least, explain to the medical staff that we feel one way or another. “We know it’s not their fault, but… (Fill in the blanks of your emotions and needs).”
Preparing in advance for non-emergency care
This story came from our preoccupation with the baby’s health this week, which required immediate attention. But as experienced parents, we have visited doctors and the E.R. quite a few times along the years. We learned that it’s important to prepare the children for a doctor’s visit, for them to cooperate and be more relaxed. One of the tools we use heavily, to prepare them for this, is the social story.
In conclusion
When we communicate pleasantly and effectively, we increase the chances of being heard. As a medical professional and mother of special children, many times I function in both roles. It is my duty to remember the needs of both parties, and to meet the tasks of both parties. I hope that in time, the medical staffs will learn more about the fascinating world of caring for children with special needs and be able to offer them good, tailored medicine. It is advisable to arrive as prepared as possible, both in terms of knowledge and emotionally, when visiting a clinic or hospital. Know your rights.
Let the medical teams do their job, but be alert to situations when advocating for your children during medical treatment is necessary.
We hope that because of the early detection of the epilepsy, it will reach balance quickly and he will grow to be healthy. But we are also preparing for the option of stem cell therapy when he reaches the minimum age of three.
Good health to all.
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