March 18: National Trisomy 18 Awareness Day – Jamilah’s Journey

Written by Ambassador Advisor and Grandview Kids parent, Abby V.

During her pregnancy, Tabitha received the hardest news a parent could hear after completing Non-Invasive Prenatal Testing (NIPT). Her unborn child was diagnosed with Trisomy 18, or Edwards Syndrome, a severe genetic disorder caused by an extra copy of chromosome 18. She was told the condition was “incompatible with life” and had to decide whether to terminate the pregnancy or carry it to term, with the likelihood of stillbirth. Even if the child survived delivery, critical developmental and growth issues would make survival past the first year highly unlikely.

As a parent, Tabitha felt “scared to death” upon receiving the diagnosis. She mourned her entire pregnancy, as there was little assurance her child would survive after birth. Tabitha made the difficult decision to continue the pregnancy, allowing her child to “call the shots.” Jamilah was born at 34 weeks gestation and spent several months in hospital for stabilization and growth. Many children with Trisomy 18 have heart conditions, physical deformities and feeding issues. Jamilah has two holes in her heart that closed on their own, thick heart muscles that have remained the same size since birth and has miraculously not required surgery. She also has an index finger that leans over her middle finger, uses a G-Tube, has hearing loss and is non-verbal. At two-and-a-half years old, Jamilah’s growth and development are delayed compared to her peers.

Trisomy 18 affects every aspect of Jamilah’s life. “Everything is different,” says Tabitha. She must always prepare equipment, formula and medication for Jamilah whenever they leave home. Tabitha’s ability to work is also impacted, as Jamilah requires constant supervision. Due to her condition, Jamilah cannot be left to cry for even a few minutes, as she may vomit, aspirate or experience respiratory desaturation (low blood oxygen levels). “It gets frustrating at times, but her smile is worth it,” Tabitha says proudly. “If I had listened to the expert opinions, Jamilah wouldn’t be here. There’s a lot of work involved, but she brings so much joy, smiles and fun.” When introducing Jamilah to her obstetrician, Tabitha was told, “I see your purpose, and I get it.”

Grandview Kids has been a big part of Jamilah’s life. She is seen regularly through the Durham Region Complex Care Program and receives services for Physiotherapy, Occupational Therapy and Speech-Language Pathology. They are working on things that she can thrive at, and Tabitha knows that Jamilah will let her mom know when she is interested and ready to reach new goals, such as oral feeding. Tabitha had to learn Jamilah’s needs to determine what and when she would benefit most from therapy and appointments. 

Tabitha uses her experiences to advocate for Jamilah and to help other parents in similar situations. She advises parents to “go with your gut feelings. You are in control. This has to be your decision because at the end of the day you are living with the decisions you make.” Although she recognizes that everyone’s diagnosis is different and not everyone’s story is like hers, regret is hard to overcome when decisions are made ultimately because of external influence. For now, Tabitha maintains a positive attitude through it all and knows that they will make it work. She is living day-by-day and taking cues from Jamilah.