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Understanding Complex Medical Needs

When initially learning about children and youth who are available for adoption or permanency planning, you may come across a profile that uses the term “Complex Medical Needs”. Complex medical needs is a term used when a child or youth has health concerns or a health condition that result in three things: impacts on multiple organ systems, the high usage of medical resources and functional limitations (Kuo & Houtrow, 2016).  It is important to keep in mind that functional limitations may not be limited to intellectual functioning, but may also include limited ability to communicate or participate in activities are limited as well (Kuo & Houtrow, 2016). Many families will hear the term “complex needs” used when a child has multiple needs including trauma experiences or diagnoses like Reactive Attachment disorder. It is important to keep in mind that there is a significant difference between a child or youth who has ‘complex needs’ vs. ‘complex medical needs.’ An example of complex medical needs is a child can be born with Spina Bifida, which can limit their ability to participate in activities but has no impact on their intellectual functioning. While complex medical needs can sound scary, learning more about each diagnosis can help you better understand the needs of a specific child. Below is an explanation of some of the diagnoses or devices that fall under the umbrella of “Complex Medical Needs”. 

Understanding Hydrocephalus

Hydrocephalus is Latin for “water in the brain” and is diagnosed when there is a build up of fluid in the brain that normally moves throughout the brain. This build up of fluid puts pressure on the brain and the skull and pose a risk to cognitive or physical development (National Institute of Health, February 2018).  If diagnosed early on in a child’s life, doctors can take steps to reduce swelling and damage to the brain. Not all children with Hydrocephalus will present with symptoms and effects the same way. Like many special needs, Hydrocephalus will look different and range in symptoms for each child or youth.  

There is no one identified cause of Hydrocephalus, it can occur either during the development of the fetus or it can happen later in life after an injury or an illness like meningitis (National Institute of Health, February 2018). Treatment for Hydrocephalus usually involves some form of surgery, as there is no way to move the fluid without the assistance of some device (SickKids Hospital Staff, April 2009), the most common being a Brain Shunt (SickKids Hospital Staff, April 2009) which will be explained more in the following section.

 

Things to consider:

  • Are you comfortable parenting a child or youth with developmental delays?
  • Are you comfortable coordinating many medical appointments?
  • Do you have or are willing to renovate to an accessible home or vehicle?
  • What support services or children treatment centres are available in your region?

To learn more about Hydrocephalus, please consider:

Understanding Brain Shunts

A brain shunt is a soft and flexible tube that is connected to the brain and runs under the skin. The purpose of the tube is to move fluid from the brain to another part of the body where it can be absorbed and relieve the pressure the brain is placed under. It is one of the most common ways the Hydrocephalus is treated (SickKids Hospital Staff, April 2009).

A brain shunt is inserted during a surgery and needs to be continually monitored, as there is a chance it can block or stop draining the liquid it is supposed to (SickKids Hospital Staff, April 2009). If a shunt becomes blocked or infected, it will be removed and another one will be inserted (SickKids Hospital Staff, April 2009) through another surgery.

Things to consider:

  • Are you ready to be involved with medical professionals?
  • Do you live close to a hospital or children’s hospital?
  • Are you ready to be trained on what a blocked shunt looks like?
  • Do you have access to formal and informal supports like Personal Support Worker, respite care and parent support programs?

To learn more about Brain Shunts, please consider:

Understanding Spina Bifida

Spina Bifida is when the spinal bones of a child or youth’s spine do not fuse during their fetal development (SickKids Hospital Staff, November 2017). Because those bones did not fuse, there is the potential for the nerves that are usually protected by those fused spinal bones will be damaged. This potential nerve damage can lead to different impacts for each child but the common ones are felt in a child or youth’s legs. These effects can look like not having feeling in ones legs or having to use assistive devices to support mobility (SickKids Hospital Staff, November 2017).

Most infants born with Spina Bifida will have surgery within a day or two of being born. This surgery is to help close the open portions of the spine and ensures that further damage is not done to the nerves (SickKids Hospital Staff, November 2017). The effects of being born with Spina Bifida can look different, for some children they will benefit from using devices like wheelchairs, walkers or ankle/foot supports so it is important to clarify what support a child or youth is going to need to best feel supported.

Things to consider:

  • Do you live in an accessible home?
  • Are you comfortable with monitoring surgery areas after a surgery?
  • Are you ready to work with physio and occupational therapists?

To learn more about Spina Bifida, please consider:

Understanding Feeding Tubes

A feeding tube can take many forms and have many different purposes. However, all tubes share a common goal, of giving direct access to the stomach or small intestine through the abdominal wall (SickKids Hospital Staff, March 2018). It can be recommended that children get a feeding tube for a number of reasons, the most common reasons being that children are having issues chewing or swallowing their food or the child/youth is having issues gaining weight because they cannot keep enough food in their stomachs (SickKids Hospital Staff, March 2018).

Children who have feeding tubes require adults to help them feed themselves and maintain a healthy weight (Nelson, Lacombe-Duncan, Cohen, Nicholas, Rosella, Guttmann, & Mahant, 2015). Special trainings are needed to know how to use a feeding tube, but there are networks of doctors and nurses across the province who are ready to assist families as they navigate this medical device. To see what feeding a child through a G-Tube can look like, please watch the video listed in the resources below.  

Things to consider:

  • Do you have a willingness to learn how to change feeding tubes as well as how to respond to blockages and other needs?
  • Are you comfortable changing your cooking style to work with a feeding tube including a blended diet or using medical formulas?
  • Are you comfortable asking for advice from doctors/nurses?

To learn more about Feeding Tubes, please consider:

Understanding Tracheotomies

A tracheotomy is a device that is inserted in order to help a child or youth breath when their airway is blocked or obstructed (SickKids Hospital Staff, August 2017) like there has been an injury to their throat. In most cases, this devise is temporary, to allow the child or youth to breathe while the issue obstructing their breathing is corrected (Mayo Clinic Staff, January 2018). The device is inserted by making a surgical hole in a child or youth’s neck and placing the device in that incision.  

While tracheotomy’s are usually temporary devices, only inserted when there is an immediate need to clear an airway, they can be inserted permanently when a child or youth needs the assistance of a ventilator in order to breath.  Sometimes a child’s ability to speak or make noise is impacted by the tracheotomy, however each child’s experience will be unique and speaking with the child or youth’s medical team is important (SickKids Hospital Staff, August 2017). For an illustration on what changing a trach device can look like, please watch the video listed in the resources below.

Things to consider:

  • Are you open to learning alternative forms of communication (like sign language or Picture Exchange Communications)?
  • Are you comfortable monitoring a trach for discharge?
  • Are you comfortable working with medical professionals?

To learn more about Tracheotomies, please consider:

Tips and Tools for Parents

  • Connect with other parents who are also parenting children or youth with special medical needs. This can be a great resource for emotional support, practical advice as well as perspectives from more experienced parents. One place to look is Adopt4Life (here), a community of parents and are parenting children and youth with a variety of needs
  • Be prepared to think long term. Children and Youth with complex medical needs might need supports after they turn 18 or 21. Looking into community support like supportive housing, day programs or continued support from Children’s Aid Societies now can help you navigate the systems at a later date
  • Think about employment. Talk to your workplace about how flexible your schedule can be. Children and youth with complex medical need may need multiple appointments. Families who have schedules that can allow for time off (both planned and unplanned) is key!
  • Think about your community. Take into account how close you are to various resources, how far away is the closest hospital? Where is the closest physiotherapist? Occupational Therapist? Speech and Language therapists? What type of supports does your local school offer? Does the next district over have more services?

The image below can give you an idea about the “constellation” of supports and services you may need to access:

  • Learn about what financial supports are available. Learning when and how to apply for ongoing financial support is essential. You can look into programs like Easter Seals, Community Living, Enhanced Respite and Special Services at Home
  • Keep lines of communication open between you and your parenting partners. A parenting partner is anyone who helps you on your parenting journey. These can include your spouse, your extended family or other outside professionals. Keeping communication open between all of your partners to keep the child or youth’s needs to be at the centre of the conversation
  • Get an organizational system in order. Are you a “to-do-list” type of person? Or are bullet journals more your styles? Do you have one big family calendar in the kitchen or do all your appointments go straight into your phone? There might be a lot of appointments involved in a child or youth’s care. This could include medical appointments, therapy appointments or appointments to coordinate supports at school. By getting an organizational system in place that works for you, managing these appointments won’t seem as daunting
  • Get ready to advocate. You will be coming into contact with a number of professionals over the coming years, including medical, social and educational professionals. It is important that you understand what you are hearing and that you are not afraid to speak up if you do not. Knowing when to ask for help in learning about your child or youth’s needs and rights is also important to keep in mind

In summary, thinking about your existing skills and resources can be a great place to start when thinking about parenting a child or youth with complex medical needs. It is important to keep in mind that every child or youth, regardless of whether they share the same diagnose will present in unique and different ways. Do not be afraid to ask a child’s worker more questions about what a child needs from an adoptive parent! Balancing the importance of learning as much as possible about a child or youth with understanding that their supports and needs will change can help you gain a better understanding you can have about whether your skills and resources will be compatible with the child or youth’s needs!

Content References

The most commonly used resource when writing this section was the “AboutKidsHealth” website that is created and updated by the Hospital for Sick Children Staff from Toronto, Ontario. This resource is a great place to learn more about any health issue that a child or youth in your care can have.

Kuo, D. &  Houtrow, A. (2016) Recognition and management of medical complexity.  Pediatrics. 138(6) Retrieved from: http://pediatrics.aappublications.org/content/pediatrics/138/6/e20163021.full.pdf

Mayo Clinic Staff (2018, January) Tracheostomy. Retrieve from: https://www.mayoclinic.org/tests-procedures/tracheostomy/about/pac-20384673

National Institute of Health (February 2018)  Hydrocephalus Fact Sheet. Retrieved from: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Hydrocephalus-Fact-Sheet

Nelson, K., Lacombe-Duncan, A., Cohen, E., Nicholas, D. B., Rosella, L. C., Guttmann, A., Mahant, S. (2015) Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review. Pediatrics. 136(1). Retrieved from: http://pediatrics.aappublications.org/content/pediatrics/early/2015/06/23/peds.2014-4162.full.pdf

SickKids Hospital Staff (2009, April) Hydrocephalus and treatment: Shunts and endoscopic third ventriculostomy. Retrieved from: https://www.aboutkidshealth.ca/Article?contentid=858&language=English

SickKids Hospital Staff (2009, July) Ventriculostomy and shunts for brain tumours. Retrieved from: https://www.aboutkidshealth.ca/Article?contentid=1355&language=English

SickKids Hospital Staff (2017, August) Tracheotomy and tracheostomy tube: How they help your child. Retrieved from: https://www.aboutkidshealth.ca/Article?contentid=3264&language=English

SickKids Hospital Staff (2017, November) Spina bifida. Retrieved from: https://www.aboutkidshealth.ca/Article?contentid=848&language=English

SickKids Hospital Staff (2018, March) G/GJ tubes: Making the decision to get a feeding tube

Retrieved from: https://www.aboutkidshealth.ca/Article?contentid=2822&language=English