Five lessons of raising a medically complex child

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Elevating a baby with a fancy medical situation is much from the expertise most dad and mom think about. “The very first thing I thought of was her high quality of life,” says Aubree’s mom, Michelle.

After they realized they had been anticipating a child, Michelle and Stephen Strickland had been delighted. The South Carolina couple regarded ahead to their baby’s first phrases, first steps, and first household trip. “You’ve got this imaginative and prescient of an ideal life,” says Stephen.

However when Aubree was born with a rare and complex condition, the couple entered a world they’d by no means anticipated: the world of medically advanced dad and mom.

Aubree is certainly one of a small variety of kids born with cloacal exstrophy, or OEIS syndrome, and epispadias. A portion of her massive gut was uncovered on the surface of her physique, as had been the 2 halves of her bladder that hadn’t fused throughout being pregnant. Her urethra, the tube that carries urine out of the physique, hadn’t developed totally and the bones that usually kind a hoop on the base of the pelvis hadn’t closed.

A smiling young girl in a hospital bed with a t-shirt that says, "rare." — As Michelle and Stephen adjusted to being medically advanced dad and mom, Boston Youngsters’s grew to become their dwelling away from dwelling.

Aubree’s first surgical procedure befell quickly after her beginning. She spent three months in intensive care at an area hospital adopted by two extra months — and extra surgical procedure — at Boston Youngsters’s Hospital.

As a substitute of the proper life they’d imagined, Michelle and Stephen confronted a special actuality. Right here they share among the methods they coped and the way they’ve discovered magnificence alongside the way in which.

1. Put together for uncertainty

Elevating a baby with a fancy medical situation is much from the expertise most dad and mom think about. As they study their baby’s situation, medically advanced dad and mom must reset their expectations for his or her baby’s future.

“The very first thing I thought of was her high quality of life,” says Michelle. Would Aubree be capable to costume herself, eat, or get round independently? Would she have buddies? What would faculty be like for her?

2. Discover your staff

When the Stricklands arrived at Boston Youngsters’s for the primary time, they met most of the clinicians who stay deeply concerned in Aubree’s care at the moment, together with Drs. Richard Lee, Belinda Dickie, and Ted Lee.

“There’s no approach to describe the burden that was simply gone once we received to Boston and realized she was in the very best palms,” says Michelle.

A young girl and a physician sit smiling together. — Aubree with Dr. Richard Lee, a part of the staff that’s helped look after her since she was an toddler.

When she might lastly go dwelling, Aubree wanted vital hands-on care. The staff at Boston Youngsters’s eased the transition by equipping her dad and mom with provides and coaching. Again dwelling, Aubree’s staff expanded to incorporate native clinicians who proceed to collaborate with Boston Youngsters’s to handle her care.

3. Anticipate your expectations to vary

Michelle and Stephen wished to keep away from orthopedic surgical procedure in any respect prices. They dreaded the concept of Aubree carrying a solid that prolonged from her ankles to her chest for eight weeks. Nonetheless, when she was 4, Aubree underwent the operation at Boston Youngsters’s, a part of a 15-hour day within the OR. After Dr. Young-Jo Kim reduce and repositioned her pelvic bone to raised help her bladder, Drs. Lee, Dickie, and Lee carried out a Mitrofanoff process, creating a brand new channel from her bladder to a small opening on her stomach.

A young girl waves happily on a beach with firecrackers in the background. — The operation Michelle and Stephen as soon as dreaded helped Aubree achieve independence.

The lengthy day served as a turning level. After recovering, Aubree — who first began strolling at age 3 — began to run, leap, dance, and do gymnastics. For the primary time, she might placed on pants with out her dad and mom’ assist and gained independence in self-catheterizing.

“I didn’t even understand all of the issues I assumed she’d by no means do till she began doing them,” says Michelle.

4. Lean in your village

As we speak, the Stricklands’ village consists of household, buddies, different medically advanced households, and Aubree’s best friend, Makayla.

“Clearly, if I might change some issues, I’d,” says Michelle. “But when I take a look at this example holistically, the explanation this occurred is the household we gained at dwelling, the group of medical mothers, and the staff in Boston. They’re decided to present Aubree the very best quality of life.”

Two young girls lean into each other while reading a children's book. — Aubree together with her bestie, Makayla. (Photograph: Michael Goderre/Boston Youngsters’s Hospital)

5. Know that some days are simpler than others

Now 6 years previous, Aubree has traveled to Boston Youngsters’s 10 occasions, had 10 surgical procedures, and faces extra sooner or later. Nonetheless, she began first grade this fall and immediately made new buddies.

“I strive to not dwell within the unfavourable,” says Michelle. “Some days are simpler than others.” On more durable days, Michelle finds inspiration by Aubree and her dedication to by no means quit.

“This isn’t the proper life we imagined,” says Stephen. Then, tilting his head towards his joyful, radiant daughter, he provides, “However that is her excellent life.”