The isolation before, during, and after treatment at the hospital; the concern about germs; the day-to-day stress about the child’s health and recover – all of these factors can have lasting negative effects on parents. Having a baby with SCID can be a stressful, scary, and traumatic journey for parents and caregivers. It is important to remember that you are not alone.
What is Normal
- Feeling fearful and uncertain
- Feeling hyper-vigilant about your baby’s health
- Feeling unable to relax or on edge
- Feeling exhausted and worn down
- Having difficulty focusing on other tasks
- Feeling a mix of different emotions that vary day by day or even moment to moment
- Feeling disconnected from family and friends
- Feeling tension with your significant other
Signs of Concern
Distress is very normal and expected when caring for a baby with SCID. There is never a bad time to seek help if you need additional support. However, the following may indicate a need for more immediate and/or more intensive help:
- Depressed mood, feeling down most of the time nearly every day
- Loss of interest in things you previously enjoyed
- Feeling irritable or restless most of the time
- Feeling hopeless or helpless
- Feelings of excessive guilt, loneliness, or isolation
- Difficulty sleeping or eating
- Inability to complete daily tasks of self-care
- Thoughts of harming yourself or somebody else
- Disagreement with your signifcant other
- Upsetting interactions with family or friends
How to Get Help
- Ask your team for a referral to a pediatric psychologist or health psychologist. These specialists often have experience working with children and parents who are coping with traumatizing, prolonged, and/or life-threatening illness.
- Consider individual therapy, marriage counseling, and whole family therapy if you have children old enough to participate.
- If you are specifically experiencing symptoms of traumatic stress, including nightmares or unwanted memories, avoidance, heightened reactions, anxiety, or depressed mood, you may want to seek out a therapist with experience in treating individuals with post-traumatic stress disorder (PTSD).
- Call your insurance company and ask for covered mental health providers in your area. Make sure to ask about what benefits are offered and what services are covered or are not covered. Be aware that in some situations billing may be done through your child’s insurance and medical diagnosis.
- Speak with your primary medical doctor (PMD) about therapy referrals. If appropriate, you may also choose to ask about your PMD about medications to help with mood or anxiety. They may refer you to a psychiatrist, a physician who specializes in medical treatment of emotional and mental health concerns. It is very common for parents of children with serious health concerns to receive psychiatric help managing their distress.
- Social Support: Reach out to friends and family. Be honest about what you need and what you don’t need, and don’t feel like you need to return calls or message immediately. Use social media, Caring Bridge, or other similar sites to help communicate only the information you want to share. This can be helpful for families to avoid having the share the same message repeatedly. It is always okay to request privacy, and it is always okay to ask for help when you need it.
- If your child has older siblings who are struggling, ask your team if there are child life specialists or therapists available to help answer questions and provide support.
During times when you’re not able to visit a therapist, there are also online resources that offer materials to help manage stress and teach relaxation. Please note that online resources should not be a substitute for utilizing mental health services provided by a professional.
- Psychology Today: Find a Chronic Illness Support Group
- Camps & Rec Programs for Chronic or Serious Illness
- Nemours: Daily Living & Financial Guidance
- Children's Colorado: Toolkit for Parents of Children with Chronic Illness
- Global Genes Project: Parenting a Child With a Life-Limiting Illness
- IDF: SCID - A Family's Journey Through Isolation
- SCID, Angels for Life