One of the most common questions asked by parents on our support groups, involves preparation for medical procedures. While we can give basic guidelines, it is important to remember that each child is different, each hospital is different and each family is different. There is no cookie cutter experience.
You are your child’s voice and advocate. You as their parent is also the one constant in their constantly changing life. It is important that you have all the information that you need. You need to gain an understanding of their condition, what will be done to correct it and what the possible process will entail from admission, theater preparation, surgery, post-op and recovery. Information is the key to being able to prepare your child and plan how to deal with surgery best.
In the event that there are things that you do not understand, or that you are not sure of, it is your right and responsibility to ask your healthcare provider. Open communication between you and your child’s care team is important. You are a vital part of the team and therefore, it is important that you understand their plan of action. It is also important that you understand possible complications so that you can plan accordingly.
HANDY TIP: If you are able to take notes during your child’s consultation, do so. If you are not, take a moment when you get home to write down as much as you can remember. Write down any and all questions that you may want to ask, or that you are unsure of. Write down the answers to your questions when you speak to your care team. Should you feel overwhelmed, you may ask a friend or a family member to accompany you and to write down the answers on your behalf.
HANDY TIP: Do not get swallowed up by medical jargon. You did not study medicine, you are not suppose to know what all the medical terms mean. Ask your care team to explain terms that you are unsure of, using simple words and terms. As time progresses you CHD vocabulary will develop and you will understand more of the technical terms.
The average hospitalisation for a complication free surgery is between 7 and 10 days. some children are even released as early as 5 days post-op. Complications may however, lead to an extended hospital stay. It is important to plan before the time, to know the hospital’s visiting policy, to plan your daily routine during this hospital time, this is equally important for patients who receive care locally, or who receive care far away from home.
Talk to other parents, no one will understand your fears or needs like other parents:
Heather wrote: “I was so fortunate. A lovely gentleman called Trevor and his lovely wife Robyn (whom I had never met before) but who also had been on the journey before me, came to the hospital and told me what to expect when entering ICU.”
For a list of CHD support groups please visit our Support page.
Prepare your child
It is also important to communicate honestly with children about what they are about to face, without being scary. If a procedure will be painful, do not lie and say that it will not hurt. Rather reassure them that you will be there to support them and help them as much as you can. You can also explore natural pain management products or distraction tools, to reduce the trauma of possibly painful experiences such as injections.
Using age appropriate toys, pictures and videos you can prepare your child for what to expect. Prepare them for possible uncomfortable experiences such as the mask that delivers the anesthesia that gets placed over their nose and mouth, or the sight of medical personnel with their masks and head covers. If at all possible try to acquire some of the common medical supplies that the child may encounter and allow them to play with them, put them of their teddies or dolls. You may even consider to send one of their soft toy friends to have the same surgery as they are having, or you can order them a healing friend or a cape from our online shop. This way your child will have a friend that they can relate to, someone who is just like them.
HANDY TIP: Do not speak ill of medical personnel or negative experiences infront of your child. It is important that your child trusts the team that needs to look after them. Your child needs to perceive their team as a united team with their best interest at heart. Should you have an issue with a member of your child’s care team, take it up with hospital, using the correct channels, outside of your child’s ear shot.
HANDY TIP: Make older children part of the process, and give them a sense of control. Let them help you pack their bag. Older children / teens should be involved in the decision making process. By giving a child a degree of control, you can and will reduce their anxiety levels.
Allow your children to connect with other children who have gone on this journey before them. It gives them hope, they will see that they are able to work through this experience and come out on top.
Jackie wrote: “Follow your gut and insist on your child’s pre-meds before going into surgery. I so so wish I did. Forcing the sleeping masks over your 4-year-old face before you have to lay him down on the surgery table for 6 hours and he is traumatised……..it still haunts me 2 year’s later. The pre-meds are SO important. …….it calms them and they are relaxed.”
Often we find that siblings deal with different emotions. They may even harbour some resentment towards their CHD sibling. This is a normal reaction, and it is important to not shame your child’s feelings. It is important to make time to spend with your child’s siblings. Plan and schedule time, even when your CHD child is in hospital. Make use of your support network to help you to get this done.
Involve the siblings in the hospital preparations and give them the same honest information that you are giving your child affected by CHD. Address their fears and concerns with the same urgency and careful attention that you address the fears and concerns of the child receiving surgery. Explain changes in routine and family life to them before the time.
HANDY TIP: When possible write down changed routines and put them on the fridge. This way the sibling can refer to the list when they are unsure of what is happening. Also write down important contact number and dates and times so that they have an easily accesible reference source for when they forget these things in the chaos.
Establish lines of communication before the time. If siblings are not allowed in ICU or at the hospital, make arrangements for telephone calls, skype calls and /or letters and pictures.
HANDY TIP: When packing a sibling’s bag / preparing their home environment. Place little post-it notes in unexpected places, in between their clothes, toys, on snacks etc. reminding them that you love them, that they are important and that you are thinking about them.
Consider honouring the sibling’s bravery with a certificate or an honorary warrior cape.
Prepare other Family members and friends
Your family and friends are invested in your child’s health and in supporting your family. It will however, get very tiring to repeat the information and answer the same questions over and over. It could be advisable to arrange a brief coffee session with key support members to inform them of the road forward. This way you can answer questions and arrangements can be made as to who will be doing what to support your family in this time.
There are a few things that Heart Kids South Africa can do to help you manage the flow of information and communication:
- We can set-up and administrate a whatsapp group with family and friends and then a liaison, appointed by you, can be the link between you and the group can post key information here. This way everyone will be up to speed, and you will not need to field calls and messages while you are trying to focus on your child.
- We can set-up a private / password protected page on our website where family and friends can access the information you want them to have and where we can post occasional updates. You will then be able to communicate the link and password to a key person who can distribute it to the necessary family and friends.
- Send you a helpful “how to support our family” graphic and message that you can send to family and friends to help them to support you better.
HANDY TIP: Once these information channels have been set-up, change your voicemail to direct people to this channel. Only answer necessary phone calls and messages. Preserve your energy to support your spouse and children.
For more information about how we can help you, and to make arrangements for us to set-up the information and support channels, please email firstname.lastname@example.org
HANDY TIP: Don’t leave packing and preparations to the last minute. This hospital bag check list will help you with some ideas for what to pack.