In a groundbreaking initiative, families of children with Down’s syndrome are actively training NHS maternity staff to enhance support for new parents. The charity Downright Perfect, based in Dorset, has established sessions in Bournemouth and Poole after the Dorset NHS trust recognized a need for better communication with families during prenatal and postnatal care.
Emma Cross, chair of trustees of Downright Perfect, shared her personal journey, expressing some regret over the experience she had when giving birth to her son JoJo at Poole Hospital five years ago. "I hadn’t met him, I didn’t know who my baby was. I’d had a C-section, they’d held him up over the curtain as they do and then whisked him away. There was no medical emergency. There was no need for that information to be delivered at that point in time," Cross said. Her perspective reveals the emotional impact that such delivery experiences can have on parents.
Similarly, fellow trustee Claire Oakley recounted her own experience. She gave birth to her son Noah at Dorchester four years ago. During this moment, while holding Noah, the neonatal nurse specialist reassured her and her husband with a calming message: "He’s still your baby boy, he’s the same child as he was five minutes ago." Oakley emphasized how crucial the demeanor of health professionals is during crucial moments, saying, "Because everyone was so calm, we were so calm and it really did set us up for such a lovely journey to the start of Noah’s life."
Kerry Taylor, the head of midwifery at University Hospitals Dorset, addressed the feedback from parents that led to these necessary conversations. She acknowledged that despite their best intentions, there was still much room for improvement in supporting families. "We ran two study days last year and of all of the study days that we run here at our maternity and neonatal department, it was the most popular session. We quite simply didn’t have enough places for all of the people who wanted to attend," said Taylor. This overwhelming interest highlights the community’s desire for changes in training and support.
Moving forward, the training sessions will now occur annually to ensure that all newly qualified midwives have the opportunity to acquire this essential training. In addition to the session, Downright Perfect produced support packs that are distributed to new parents through hospital staff in multiple locations including Southampton, Dorchester, Bournemouth, and Poole. The charity has also made a point to visit with staff at Poole’s maternity unit on significant dates, such as World Down Syndrome Day.
In a parallel initiative, actor Dr. James Martin MBE launched a significant five-year research project titled “My Life with Down Syndrome” at Ulster University. This project aims to explore various aspects of living with Down's syndrome from childhood through adulthood and seeks to enhance the support available to individuals with the condition.
Dr. Martin highlighted the importance of participation in this research, stating, "I have two of my friends who would have health problems and they have Down's syndrome too. I don’t really have a heart problem myself. And it’s nice to see what their experience of life is." Dr. Martin’s emphasis on personal stories underscores the need for individuals’ voices in shaping research outcomes.
Under the guidance of Professor Frank Casey, the project targets improvements in antenatal detection of Down’s syndrome and aims to address gaps in service coordination for care providers. According to the latest figures, over 1,450 individuals were born with Down’s syndrome in Northern Ireland between 1990 and 2023, and the research is critical in understanding the needs of this population. Ivan Martin, Dr. Martin’s father, shared reflections on the unpredictability of raising a child with Down's syndrome. "Everybody has their challenges. We got our shock in the delivery room when this wee fella arrived 33 years ago and here he is and he had Down's syndrome," Mr. Martin commented.
Another remarkable effort is underway from Clare Cerasuolo, who is using social media to share her son Joel's achievements. Clare initially began posting videos to help families connect and to highlight the impressive capabilities of individuals with Down's syndrome. "I want people to see how amazing people with Down's syndrome are," she articulated. Through her efforts, Joel now boasts over 42,000 followers, and the positive impact of their online presence is inspiring numerous families.
These collaborative efforts from parents, charity organizations, and healthcare professionals showcase a significant turn towards improving the experience of families affected by Down's syndrome. By highlighting personal stories and increasing the involvement of those directly affected, there is a strong push toward creating a supportive and informed community that enhances awareness and promotes understanding.
As society continues to embrace inclusivity, initiatives like those undertaken by Downright Perfect and innovative research at Ulster University signal a hopeful future for individuals with Down's syndrome and their families. Engaging and respectful dialogues within healthcare settings, educational institutions, and public platforms will contribute immensely to reshaping perceptions and fostering acceptance.
The efforts made so far demonstrate that through teamwork, empathy, and informed strategies, progress is not only possible but is actively taking shape, ensuring that future generations grow up in a world that understands and values their unique contributions.
