Adopting a child with HIV is something that many parents would have a lot of reservations and fears about. Much of this is because most people in the general public are not fully aware of the truth about HIV management and treatment today and how it impacts the lives of children who have this virus.
The following information is designed to give you an accurate and full understanding of information that will help you make decisions about adopting a child who has HIV. This section was provided by the Hospital for Sick Children.
How is HIV transmitted to children?
The most common way that children become infected with HIV is through mother-to-child (perinatal) transmission. This can happen during pregnancy, delivery or through breast feeding. In the absence of any intervention 15% to 40% of babies will become infected. However, if the mother is diagnosed early in pregnancy, is treated with anti-HIV medications, and avoids breast feeding the risk of the baby becoming infected is less than 2%. Most perinatal HIV infections occur in situations where the mother is unaware of her HIV status and/or does not receive treatment for HIV in pregnancy.
Is there any risk of transmission to other members of our family or anyone else we know?
HIV is not transmitted through casual contact. It can only be transmitted by blood (e.g. sharing needles or other blood-to-blood contacts) and unprotected sex.
There is no risk of transmission through skin to skin contact or contact of intact skin with body fluids such as saliva, tears, urine or feces. Hugging, kissing, cuddling, touching, sharing towels and food utensils or other household items also pose no risk. HIV transmission does not occur even if infected blood comes in contact with skin, though using gloves is advised for any blood exposures. Sharing tooth brushes or razors is not advised due to a theoretical, though extremely remote, risk of HIV transmission. When a child is taking effective HIV medications, the amount of HIV in blood is extremely low, making such exposures even lower risk.
Children living with HIV can live healthy lives, attend day care, school, play sports, have friends and participate in all normal childhood activities. With the medical treatment available in Canada, HIV has become a manageable, although chronic condition. Children are expected to grow up, live a long life, have productive careers, get married and have biological children who are HIV negative. Some children, who have not had adequate health care in the past, may need more extensive medical care and treatment until their immune system is functioning well. A small number may have long-term problems due to delays in starting effective HIV treatment (e.g. developmental delays).
What can adoptive parents expect in managing the health of a child with HIV?
Adoptive parents can expect their child to have good health when HIV is managed well. This requires regular medical checkups with a Pediatric HIV specialist. Most children have checkups every one to three months, depending on their health status. Parents will need to give their children HIV medications 1-2 times every day, as prescribed. Children with HIV need a normal, healthy diet. They can participate in family life as any other child does. They can have pets. There is no need for special cleaning in the home.
Can adoptive parents obtain more medical information before deciding to adopt a child with HIV?
Yes, it’s important to consult a Pediatric HIV specialist to discuss any medical information available on the child’s HIV status and to access general information about HIV issues for children. If no medical information is available, it is still helpful to discuss general information.
What support is available to parents of children with HIV?
Most children who have tested positive for HIV in Canada receive specialized medical care in large pediatric centers. The staff, including physicians, nurses, social workers, and others, work closely with families and their children providing medical care, information, support and counseling. As well, clinic staff can tell parents about support and services provided by HIV support organizations and other community agencies.
Health Insurance for Children Adopted Internationally
Ensure that children always have health insurance from the first day they enter Canada. If you have applied for a grant of citizenship for the child under section 5.1 of the Citizenship Act (Canada), and Citizenship and Immigration Canada has confirmed that your child meets the eligibility requirements to apply for citizenship (i.e., children adopted internationally by Canadian citizens) you can apply for provincial health insurance such as Ontario Health Insurance (OHIP) immediately without a waiting period.
Or ask about the adoption agency’s policy on obtaining private health insurance while waiting for provincial health insurance.
Most children with HIV need expensive medications. Some provinces provide these free. Also, drug insurance pays for these and children are eligible for drug insurance through:
Managing the Stigma of HIV
What is stigma of HIV?
Many people do not have correct information about how HIV is transmitted or not transmitted, or the effectiveness of treatment. This can lead to fear, prejudice, rejection and discrimination towards people with HIV. Prospective adoptive parents may not have had experience with HIV or the stigma and may not understand how this could affect their children.
How could the stigma of HIV affect my adopted child with HIV and my other children?
We often expect that people we know will be accepting of a child with HIV. However, this is not always the case. Many people are fearful of those with HIV because of a lack of understanding of the condition and how HIV is transmitted. It may be difficult to know if someone is open to learning more about HIV.
Disclosure of the HIV status of a child that has been adopted can have devastating consequences for the child as well as all members of the adoptive family. Due to fear and wrong information about HIV, children with HIV and their siblings can be isolated, teased, bullied and rejected. Also, some people may think the child with HIV is sick and dying when they’re very well. People should not be afraid to associate with a child with HIV and their family. We want to prevent, fear, judgmental attitudes and discrimination, based on wrong information, from affecting children who live with HIV, their adoptive families and the image of their birth mothers who had this as well. Once told, this information cannot be taken back. Therefore we recommend that adoptive parents not tell anyone about their child’s HIV status.
Who needs to know and who does not need to know about a child’s HIV status?
A child’s HIV status is private health information which belongs to the child and should not be disclosed to others until the child is old enough to make decisions about this and to manage the stigma he or she has to live with for the rest of his or her life. Therefore, when considering adopting a child with HIV, we strongly recommend that parents not tell anyone until they are fully informed about who needs to know and who does not need to know the child’s HIV status. This means even close family and friends should not be told as they may not understand the stigma of HIV and the reasons to keep this information private. Once one person is told, even before the adoptive family has met the child, the disclosed person could tell someone else and the child’s private health information could be disclosed to anyone who will know the child. This could affect the child for the rest of his or her life.
Who needs to know about a child’s HIV status?
For any questions about this, discuss the need for disclosure of HIV and education about HIV with staff in the child’s Pediatric HIV clinic.
Who does not need to know about a child’s HIV status?
Can we leave our child with a babysitter when the child needs medications?
Yes, child care providers can administer occasional doses of medications, kept in unmarked containers, without being told the specific reason for the medications. The child’s HIV clinic staff can give advice on this.
What can parents say about medical care to children who have not been told about their HIV?
Young children do not need to know that they have HIV, as it will not help them and may lead to harm through inadvertent disclosures at school or to others outside the home. But children do need to know information that is appropriate to their level of comprehension. Parents can provide truthful information without saying HIV, according to the child’s questions and observations. For young children under approximately 10 years old, an example might be: “you have a blood problem and your medications help you to stay well”, “you’re going to the doctor for a check-up to make sure your medications are working well to keep you healthy”. As children mature, clinic staff will continue to discuss with parents how to answer their questions honestly, without saying HIV, leading to telling children when they are about 10-12 years old. At this age, children can begin to understand the information, reasons to keep this private and make decisions about who they wish to tell.
What can parents say to others about their child’s health?
When asked, parents can tell close family members and friends the same information provided to the child so the child’s observations and questions can be answered the same as anyone else’s. Further information about this can be discussed with the child’s Pediatric HIV clinic staff.
Further information on adopting children with HIV
For families seriously considering adoption of a child living with HIV, consultations can be arranged with pediatric HIV teams to discuss in detail what to expect. In Ontario, contact:
Helpful Link and Resources for HIV:
Health Care for Children with HIV - http://www.aboutkidshealth.ca/En/HealthAZ/Pages/default.aspx?name=h
General Information in Canada - http://www.catie.ca/en/basics/hiv-and-aids
World Wide Issues Affecting Children, Stigma - http://www.avert.org/hiv-aids-stigma-and-discrimination.htm
Adopting Children with HIV - http://projecthopefulcanada.wordpress.com
The Teresa Group; A Community Agency in Toronto which Supports Children, Siblings and Families with HIV - https://teresagroup.ca/
Salter, R., King, S. M., Smith, M. L., Bitnun, A., Brophy, J., Fernandes-Penney, A., Lefebvre, A. Louch, D., MacDougall, G., Moore, W, Read, S., (2007) Disclosing HIV diagnosis to infected children: A health care team's approach. Vulnerable Children and Youth Studies, 2(1), 12-16.