Traveling to Children’s Health for heart surgery

Getting ready for your child’s heart surgery or heart transplant can be worrisome. There are a lot of details to consider, and you likely have many questions. The care team at The Heart Center at Children’s Health℠ is here to help you. Whether you’re from the Dallas area or out of town, this information can help you plan your family’s travel from your home to our center.

Travel for pediatric heart transplant

When your child is on the national heart transplant waiting list, it’s impossible to predict when a matching donor heart will become available. The wait could be days, weeks or months. The transplant surgery and follow-up care will then last several months. You’ll need to prepare for several months of traveling to or staying in Dallas for frequent visits before and after the transplant. If you live:

  • In or near Dallas: You may choose to travel between your home and Children's Health for your child's care.
  • Outside the area: Staying in Dallas may be more convenient for your family.

Our heart transplant team calls you when a heart is available, which could be any time, day or night. It’s important to answer your phone at all times, no matter what the number says. If it’s after hours, the phone number may not be from Children’s Health. You’ll need to be ready to bring your child to Children’s Health on short notice.

As your child goes through evaluation for a heart transplant, our social workers meet with you to plan what resources you need. We help you find affordable lodging and connect you with resources for meals, transportation and other needs.

Planning for pediatric heart transplant by status levels

Your child’s health determines their status on the heart transplant waiting list, and the status level guides the preparation process. The status levels and their preparations include:

  • Status 1A: Children at this level are very sick and need to be hospitalized as they wait for a donor heart. Status 1A is the highest level on the heart transplant waiting list, and most of these children must be at Children’s Health for their care. If your child has a ventricular assist device (VAD), they may be able to wait at home for their heart.
  • Status 1B: At this level, children need intravenous (IV) medication but usually do not need to stay in the hospital while waiting for a donor heart. Families with a Status 1B child must live or stay within two hours’ drive of Children’s Health. If you live within that area, you can stay home. If you live farther away, you’ll need to arrange long-term lodging closer to Children’s Health.
  • Status 2: Children at Status 2 don’t need hospitalization while waiting for a donor heart. It’s best if you live within two hours’ drive, but a little farther is also acceptable.

Lodging near The Heart Center at Children’s Health

Lodging options for your family depend on your child’s status on the heart transplant waiting list and how close you live to Children’s Health:

Status 1A: If you live:

  • In the Dallas area: You can stay at home while your child receives care at Children’s Health while waiting for a donor heart.
  • One or more hours away: Our social workers help you find lodging at either the Ronald McDonald House (1/2 mile from Children’s Health) or other nearby long-term accommodations.

Status 1B and 2: Once you come to Children’s Health after receiving our call, one parent or other adult can stay with their child in the hospital room for the first night. It’s a good option if you come in late in the evening after the transplant call, when other lodging options aren’t open. The next day, our social workers help you find long-term lodging.

When you get the call for pediatric heart transplant

If your child is waiting for a donor heart at home, here’s what to know and do when we call you:

  • Depending on what time we call you, your child’s transplant surgery will be later that day or the next morning.
  • Your child must stop eating or drinking anything except sips of water.
  • Leave for the hospital as soon as you can, and bring what you’ll need for a few days.
  • Bring the transplant binder that we gave you during your child’s evaluation.

Learn more about what to expect with any type of heart surgery, including:

  • How to prepare before surgery
  • What to bring to the hospital for your child and yourself
  • What to expect during and after your child’s surgery
  • Entertainment options for your child, including playrooms with toys and games

After pediatric heart transplant at Children’s Health

When you’re rooming in (staying in your child’s room), we show you how to take care of your child’s postoperative needs as they recover. We provide support and answer your questions to help you get comfortable taking care of your child on your own. Before we discharge your child, you spend 24 hours taking care of them with nurse supervision.

If you live more than two hours from Children’s Health, it may be more convenient to stay nearby for a few months after heart transplant surgery. Your child will have follow-up visits with the heart surgeon and transplant team at a minimum of:

  • Every week for the first three months
  • Every other week for another three months
  • Every month after that until one year after transplant

Travel for other pediatric heart surgeries

Our social workers also help arrange lodging, meals, transportation and other needs for children who are having other types of heart surgery. When your child is having a scheduled surgery (not an emergency surgery), you can plan ahead for your lodging and other details based on:

  • How long their hospital stay will be
  • How far you live from Children’s Health

Lodging near The Heart Center at Children’s Health

Our social workers can help you with a variety of options for patient family lodging. At least one parent may also stay overnight in their child’s hospital room.

Our policies for parents’ overnight stays in the hospital may change frequently. Get up-to-date information about our visiting hours and policies, and check with your child’s care coordinator to find out the latest policies.

Dining around Children’s Health

You have several options for meals, snacks and drinks while your child is at Children’s Health, including:

  • Eating at the hospital: Our dining and food services include cafés, restaurants and vending machines.
  • Eating outside the hospital: Your child’s nurses can help you find restaurants that deliver to the hospital.
  • Bringing your own food: Off the main ICU waiting room, a small room has a microwave and a refrigerator, usually with some snacks. You can bring food and eat there.

We provide lactation support services for nursing moms, with a milk lab to store milk during your baby’s hospital stay. You can rent a breast pump on-site.

Find out more about other amenities available to you and your family in our patient guide, including ATM, parking and gift shops.

Getting to Children’s Health

Find a map, directions and parking information for Children’s Medical Center Dallas for driving to The Heart Center.

You can also take bus and rail public transportation to get here. Some nearby hotels have their own shuttles that you can ride to and from Children’s Health.

We offer a free shuttle around the Dallas campus, and transportation through Medicaid is available for eligible patients and their families. Please check with your social worker for the status of all these transportation methods during the COVID-19 pandemic.