As parents, carers, family member or friend, it is important that you have all the information and support that you need when someone you care for has a life-changing operation, such as the Mitrofanoff procedure. You will often be the person who is looking after a child or spouse both prior to and after the operation, so it is important to understand what is going to happen both short and long term.

Gathering information

Gaining information of what the operation entails, as well as what to expect from the operation, will help you understand the reason as to why it is needed.

There are numerous ways of gathering information:

The Consultant will be your initial point of contact so taking a diary to appointments will help by keeping a record of questions to be asked as well as the answers that are given. Remember to ask as many questions that you want to ask however trivial you may feel they are.

The Paediatric Urology Nurse Specialist (PUNS) / Clinical Nurse Specialist (CNS) works closely with the consultant and will be able to answer any questions that you may have missed with the consultant.

Support groups are available to provide information that is usually non-professional and more of experienced based. They generally allow peer to peer contact which provides for emotional support. See below how Mitrofanoff Support can provide support.

The Internet is a great way of gathering information, however care has to be taken as some information may be irrelevant and may cause you to worry unnecessarily.

Questions to ask before having the Mitrofanoff procedure

You are likely to have lots of questions when a family member or friend is going to have a Mitrofanoff. Below are a few key questions that you might want to ask the healthcare professional, for more questions please refer to our FAQS page.

  • What other alternatives are there to the Mitrofanoff procedure?
  • What happens in the preparation, during and aftercare of the surgery?
  • What complications can arise during the operation and afterwards in hospital?
  • Once the Mitrofanoff is working, how will we know when it is time to empty the bladder? Will the person get any feeling they want to go to the toilet? How often should he/she catheterise?
  • Who should we contact if we are having problems?
  • How do people get their catheters once they have left hospital?
  • Will the patient be able to leave a normal life?

 

Children who need surgery

Finding out that your child needs to have an operation is an emotional time. There will be many questions that will need answering, some may be simple while others not so. The time before the operation should be used to prepare your child and yourself emotionally so that when the day comes you will all be ready.

Preparing your child for surgery

It is good for the parent /carer to have gained all the relevant information about the surgery to allow you to be confident in the understanding of it. This confidence may help alleviate any anxiety your child may have when explaining to them. Your child may be scared but with careful explanation using language that they understand will also encourage them to prepare for the operation.

There are various aids to help with preparing your child for hospital, one of which is the “hospital play specialist”. They are trained in child development and the effects of illness and hospitalisation of children. They can help to introduce and explain the surgery in an appropriate way to your child. They can address any anxiety that your child may have and offer coping strategies for stress, anxiety and pain and help your child to see the surgery as a positive event.

Day of the admission and surgery

When being admitted for surgery the person will be advised of the nil by mouth protcol prior to the operation. For the safety of your child this protcol must be adhered to.

Prior to the operation healthcare professionals will visit asking lots of questions, sometimes other tests may me required such as blood tests. The parent or carer will be asked to sign the consent form on behalf of the child, having been informed of what is going to happen and the risks involved.

Your child will be allocated a bed and will be asked to change into a theatre gown.

Prior to the operation your child may be given pre-operative medication and numbing cream on the hand. This is dependant on the anaethetist.

When it is time to go to theatre a healthcare professional will check and double check your childs details against their records and your childs name band. You will then be taken to the anaesthetic room where you will leave you child in the capable hands of the theatre team.

After surgery

When your child’s operation is over they will be moved to a recovery room where they are carefully monitored while they recover from surgery. When the team are happy the persons recovery, they will be moved to the ward, the ward staff will collect your child from recovery.

Seeing your child after theatre can be quite upsetting. There will be plenty of drips, drains and catheter’s attached to your child, some of the drips may be for pain relief.

At some point you by visited by the consultant or a member of the team to explain how the operation went.

For the next 24 hours or so it is advisable to keep visitors to a minimum to allow your child to rest.

Over the next few days you can expect the drips and drains to be removed as necessary apart from the two catheter’s which will remain in place for a few weeks after you go home.

Tips for the hospital stay

The stay in hospital with your child can be a very tiring time so here are a few tips to help you through this period.

  • Eat well and drink plenty of water.
  • Stay as close to home routines (such as bed time, meal times) as possible.
  • Try and go for short brisk walks whenever possible.
  • Be thoughtful of other patients and parents during your stay.
  • Keep your diary handy to jot down notes and any questions you may have.
  • Ask for help if and when required.

 

How Mitrofanoff Support can help you

Mitrofanoff Support aims to help you feel supported by:

  • Outlining the details of the Mitrofanoff Procedure.
  • Suggesting some questions you might want to ask the doctors before your loved one has the Mitrofanoff procedure.
  • Putting you in touch with other parents, carers or family members. This can be beneficial both before the procedure, so you can ask questions about other people’s experiences of having a Mitrofanoff and afterwards, as the person learns to use the Mitrofanoff, when you may want to “compare notes” with others who have been through a similar situation.
  • Forum and social media where you can interact with others and share experiences.
  • Patient Education Days, where you can come along and learn more about the Mitrofanoff procedure from health professionals, meet other parents, carers, family members, people living with a Mitrofanoff and see the different types of catheters that are available. Children are welcome at these events.
  • Letting you know you are not alone

 

Medical information for children click here http://www.mitrofanoffsupport.org.uk/learn-about-the-mitrofanoff-procedure

For more medical information, the operation process and much more click here http://www.mitrofanoffsupport.org.uk/medical-information/