Caretaking a Child

Congratulations on the birth of your precious child! We know that every moment and every milestone with your child is a treasure, but we also realize that caring for a child with Trisomy 18 can be very challenging. There are so many decisions to make.

Should you choose comfort care? When should you take your baby home? Should you use a feeding tube? Should you have surgery? When? What about occupational therapy? Is there any financial assistance available? What about child care? The list is long.

We have the resources and answers you need to help you understand your child’s diagnosis and make informed decisions about their health. We can also connect you with other families in our community who have faced these same challenges.

Navigating Medical Care

Making decisions about your child’s care can be overwhelming and emotionally fraught. You want the best for your child, but medical decisions can be complicated, and it can be hard to know which option is best.

Your doctor will try to help you understand what to expect in the first few days of life, but doctors cannot always predict accurately the prognosis of a baby with Trisomy 18 or what medical needs your baby may need after birth or in the future. Parents often must decide what minor or major interventions (such as surgery) are best for their child given the specific risks and benefits for their baby.

One of the best things you can do is assemble a care team of providers that you trust. Whatever your child’s health needs, having experts you can turn to for advice and to answer your questions fully and honestly can go a long way to helping you feel comfortable with the health decisions you make for your child. An interdisciplinary care team can help make sure all of your child’s needs are met, as well providing much-needed support to you and other family members who provide care for your child. Providers and health professionals on your child’s care team could include:

  • Cardiologist
  • Cardiothoracic surgeons
  • Neonatologist
  • Otolaryngologist
  • Intensive care health providers
  • Neurologist
  • Social workers
  • Chaplains or spiritual leaders
  • Nurses
  • Occupational, physical, and types of therapists
  • Palliative care providers

Many families’ decision making changes and evolves after learning more about their child’s unique challenges and strengths. Having a supportive care team can help you navigate your child’s evolving health needs and provide the resources and support that you need.

The Compassionate Allowance Program

Often, those who have children with disabilities face an uphill battle trying to gain Social Security Disability (SSD) benefits based on their children’s disabilities. But the Compassionate Allowance Program allows children with Trisomy 18 to automatically qualify for Social Security disability benefits for their caregiver. Additionally, you face a much shorter application process.

The Compassionate Allowances program fast-tracks disability decisions to ensure that Americans with the most serious disabilities receive their benefits decisions within days, instead of months or years. The Compassionate Allowances initiative identifies claims where the nature of the applicant's disease or condition clearly meets the statutory standard for disability.

Finding Support

Taking care of a child with special needs can be an isolating and difficult experience for parents. Special needs parents often experience high levels of stress brought on by economic concerns, worries about their child’s health and development, and a host of other factors.

Creating a strong network of support is essential for parents to help them cope and avoid depression or burnout. That network can be in person and made up of people in your family, your friend group, your church or spiritual community, or from other areas of your life.

But many people also find value in connecting with parents online who share much in common with them. Our private Facebook group allows you to connect with parents who are caretaking a child with Trisomy 18 and understand the joys and challenges that come with that. Reach out to those in the Trisomy 18 community to learn about their experiences and to seek support. Their experiences can be invaluable for helping you navigate this new experience.