A Butterfly in Her Cocoon: Waiting for Wings to Unfold

Hlumela Tshijila
4 hours ago
5 min read

During the first three months of my pregnancy, I contracted Covid‑19. At the 12‑week blood tests, the results showed a low risk for Down syndrome but a high risk for Trisomy 13 and Trisomy 18. At that stage, the fetal specialist did not observe anything unusual.

As the pregnancy progressed, however, my gynaecologist noticed that the baby was falling further and further behind on the growth chart. We returned to the fetal specialist around 22 weeks. He detected a small hole in her heart, which he reassured us would likely resolve on its own (and was later confirmed in NICU). He also noted a short chin, a two‑vessel umbilical cord (which was later understood to have originally been three vessels, with one vessel degenerating before birth), and significant intrauterine growth restriction. These were all soft markers, and he suspected Trisomy 18.

We proceeded with another NIPT, which returned a negative result, but the fetal specialist insisted that I go on bed rest at 28 weeks and that the baby had to be delivered no later than 32 weeks.

She was delivered by caesarean section at 32 weeks, weighing only 1105 grams. Her paediatrician noticed additional features but could not determine the cause at the time. It was the geneticist who later confirmed a diagnosis of Cornelia de Lange Syndrome (CdLS).

Our daughter remained in NICU for 65 days. During this time, she developed necrotizing enterocolitis, but fortunately, her paediatrician recognised it early, and she did not require surgery. She was eventually discharged at around 2 kilograms.

In the beginning, she attended only occupational therapy. When we were financially able, we added physiotherapy and speech therapy. Her major milestones came slowly but beautifully:

At 1 year, she could sit.
At 2 years, she began crawling.
At 3 years, she started walking.
At 4 years, she achieved static standing—very much in her own unique way.

This year, we have begun to hear more and more words. My focus now is on supporting her communication and speech. She says some words, but then they disappear for a while. Her speech comes and goes.

Consistent chiropractic treatment over the past year has also made a significant difference. After each session, I could immediately see changes in her mood and her ability to form sounds, as much of the tension in her jaw was released.

Another mother encouraged us to apply to our medical aid to have her therapies covered under the Prescribed Minimum Benefits (PMB). We were successful, which was life‑changing.

She communicates through some spoken words, Makaton, visuals, and a great deal of expressive body language. She understands what we say, but forming the words to respond is difficult for her.

Her speech therapist has used various techniques—PROMPT, Z‑Vibe, food hierarchies, flute hierarchies, and the gestalt language approach—all to build strength and endurance and support the formation of speech. We have seen real progress when each method is introduced at the right time.

In terms of physiotherapy, especially crawling and walking, my husband and I have spent countless hours sitting on the floor, completing home exercises with her. We set up frames, poles, and obstacle paths to strengthen her body and develop the neural pathways needed for movement.

With occupational therapy, one of her main challenges is low registration of interoception. She also has very small hands and feet, which affects the sensory information sent to her brain. We have had to help her recognise hunger, thirst, and temperature by reinforcing these sensations daily. Although she loves to eat, she struggles to gain weight. Her teeth erupted very slowly—the last tooth appeared in November 2025, just before she turned four and a half—but she now has a full set, which is not always the case with CdLS.

Her confidence has grown tremendously, especially this past year when she began standing independently. She loves being around other children and thrives in a school environment. She attends a typical school that includes children with special needs. We work closely with her therapists and the school team to support her development.

What “Equity” Means in Our Story

For us, equity means inclusion and affordability.

There is a foundation in America that offers information on CdLS, but the syndrome is so varied that it cannot predict what our daughter’s future abilities may be. Our commitment has always been to meet her exactly where she is and to give her the very best opportunities we can.

Special needs schools are extremely expensive, and medical aids do not cover school facilitators. When we first received her diagnosis in NICU, there should have been a psychologist to guide us—someone to explain the syndrome, the road ahead, and what resources were available. Although her paediatrician mentioned some things in passing, professional counselling would have helped enormously.

We do not qualify for government grants, as we fall just above the financial threshold, yet the cost of therapies, schooling, and daily living expenses remains overwhelming. We were fortunate to secure PMB benefits and find a school willing to include her.

Her enrolment was possible only because of a visionary principal who believes in looking at the whole child, not merely their academic profile.

We dream of securing a school facilitator for her, and we are in the process of applying for a SARS disability rebate, which we hope will make part‑time facilitation possible.

Day‑to‑Day Life

My daughter is four and a half years old, but she is the height of a two‑year‑old and weighs about eight kilograms. No matter how well she eats, gaining weight remains a struggle.

She cannot yet undress herself or climb onto the toilet independently, so she needs support throughout the day. Communication challenges and low interoceptive awareness also make toilet training difficult.

But beyond these challenges, she is a joyful, silly, humorous little girl. She has her own ideas, knows what she wants, and adapts remarkably well to changing situations. She thrives with routine and repetition. Preparing her for transitions makes a significant difference, as does allowing her to explore and play in her own way. She loves helping us pack or clean—small things that give her confidence and pride.

Hope and Strength

Our hope comes from faith.

God is good, all the time.

We have been surrounded by a wonderful community of family, therapists, and teachers. Whenever I feel impatient or overwhelmed, Jesus sends someone to remind me to trust the timing of her development. This has happened many times over the years. Only this month, a stranger told me that my daughter is like a butterfly who must stay in her cocoon until her wings are fully formed—because if you rush a butterfly, her wings will never develop properly. I knew instantly this was meant for me.