Helping Siblings Thrive with a Brother or Sister who has Complex Medical Needs

We found out we could finally bring our daughter Channing home on Palliative Care when she was nine months old. At that time, Channing spent the first nine months of her life in the neonatal intensive care unit (NICU) at Johns Hopkins Children’s Hospital. This was exciting news at first, but then it hit me, “WE WERE BRINGING A CHILD HOME ON A VENTILATOR, TRACHEOSTOMY, AND FEEDING TUBE.” Those words echoed over and over in my head as we drove home from the meeting with her care team to make plans for home.

How were we going to take care of her and give her the attention she needs while working full-time and caring for our other two kids? What if the electricity went out one night? She needs power for her vent and pulse oximeter; what will we do? Channing required 24-hour care around the clock; will one of us have to stop working?

As time went on and HOME DAY approached, our concerns were eased as we found that in the state of Maryland, when you are bringing home a child with complex medical needs such as Channing’s, you are automatically enrolled into a special Medicaid state program. This allowed Channing to be supplied with a nurse for ten hours a day and eight hours at night so we could maintain a job and rest at night. In addition, she was provided with other therapies and equipment to help her grow and develop.

Nonetheless, it’s a big adjustment for parents, siblings, and the child who is medically complex to settle home into the new normal.

Coming Home Affects the Entire Family

With the support provided by insurance and the hospital to ease our transition to home, I wanted to make sure we included our 10-year-old and 18-year-old in Channing’s transition to home and care. See, with one baby in the NICU and two kids and a husband at home, our family was split for about ten months. Ten months of me spending late nights and early mornings by Channing’s side, while missing out on being a mom to the kids at home. They understood, as they knew that something really important kept their baby sister from coming home ten months earlier. But as a mom, I held a lot of guilt for not being there at bedtime and on weekends. They were still too young to understand the magnitude of the care and time she required.

I would also suggest, depending on how old the siblings are, to let them visit their brother or sister in the hospital. Check the hospital’s protocols for age, vaccinations, and seasonal cold/flu requirements. Start there if you can. Allow them to see their siblings and start to feel comfortable around the equipment (if your child is coming home on some), and encourage them to ask questions. Who knows, it might encourage them to get a career in the medical field.

Once Channing finally made it home, we enjoyed having our family all under one roof. We could have dinner together again, sit and watch a movie, or all make a trip to the grocery store. Outings took a bit more time and coordination, as we had to plan them around Channing’s feedings and medication schedule, but we managed.

Our adjustment having Channing home took a while, as it was different from bringing a typical baby home. Now we had nurses in our home all day while we were at work, therapists visiting at different times of the day, not to mention the ER visits when Channing would catch a cold or develop a common tracheostomy infection.

As things settled and we found our routines, we made sure to include Channing’s brother and sister in her care. They enjoyed seeing their sister in the NICU, but that was a controlled environment. Having her home allowed them to hold and play with her without her being connected to too many sensors. I took any opportunity to teach them about their little sister.

Including Siblings

I always encourage other families to include siblings in caring for their brother or sister with complex medical needs. They need to build that bond, especially if they were separated for ten months like Channing and her siblings. Below are some of the ways I included Channing’s brother and sister in her care:

Allow them to be hands on.

If they want to hold their sibling, let them. If they want to help transfer the child, let them hold cords, or move furniture. Our daughter (18) would start moving furniture out of the way when she knew Channing was being moved to her play area.

Let them see and witness a scary moment.

I know this may sound traumatizing, but they have to learn how they can be a part of a life-saving event. Both siblings knew where Channing’s emergency bag was and what was in it. When Channing would go into distress, and they were around, they would go right to the bag and even call 911 if the situation went beyond our control.

Teach them.

We taught both kids how to change and suction Channing’s tracheostomy and infection control (especially during flu and cold season, always wash your hands). We let them watch the trach change and taught them the most important parts, as well as what numbers to look for on the pulse oximeter that would warrant a suction.

Have fun.

We showed them all the amazing things Channing could do. Though she was limited because of a developmental delay, she still liked to play and explore her new surroundings. Her brother and sister always took the opportunity to play with Channing and help her develop by reading to her and encouraging her to use her toys.

These are just some — but not all — of what you can do to incorporate siblings in caring for a child with complex medical needs. Our family eventually became comfortable and Channing’s equipment was just an extension of her, so that came along, too.

Dealing with the Reality of Complex Conditions

Sadly, Channing passed away on April 13, 2018 at 2 1/2 years old. We had some amazing moments and celebrated milestones we didn’t think she would meet. Now, we have another major adjustment, life after Channing.

Channing was a huge part of our lives and our family’s life. She certainly left a void in all of our hearts, and some days as her mom I don’t know how I will recover or if I ever will. I do my best by making sure her siblings can express their feelings to us about how they are feeling, when they are struggling, and having a hard time coping.

The death of a child is unimaginable, profound and heartbreaking. But I am unfamiliar with how to handle the death of a sibling. At the time, Channing’s brother was 10 and her sister 19. Her brother, being so young and never experiencing the death of a close family member, misses his sister. He misses having her here and being able to play with her. Channing’s older sister feels the same way, in addition to having the unanswered question “why?” and the regrets of not having more time.

All we can do as a family is support each other and find joy in the thousands of pictures and videos we have from Channing’s short, memorable, and amazing life. We will always love you ladybug.