2023-08-27 17:14:27
Title: Mother Shares Her Journey of Raising a Child with Sickle Cell Disease
Subtitle: Marieke’s story sheds light on the challenges and hopes of families affected by the genetic disorder
Publication: The Daily Herald
Date: [Insert Date]
Marieke, a 48-year-old mother from Overijssel, experienced a mix of shock and uncertainty when she learned that her daughter, Tate, had sickle cell disease just two weeks after giving birth. Sickle cell disease is a serious hereditary disorder characterized by hook-shaped red blood cells, leading to intense pain attacks, known as crises, and other health complications. The disease is most prevalent among black people, and both parents must be carriers for a child to inherit it.
The news came as a surprise to Marieke, as she learned about her friend’s son being a carrier of the sickle cell gene while she was eight months pregnant. Marieke’s realization that she could also be a carrier prompted her to seek answers about the potential impact on her child. Despite her rational knowledge that the chances were low, her instincts told her otherwise.
After Tate’s birth, a doctor delivered the diagnosis of sickle cell disease, attributing it to a gene mutation on Marieke’s side. Marieke’s initial feelings of guilt and helplessness were overwhelming, with thoughts of her child’s potential pain and suffering plaguing her mind. With every pain experienced by Tate, Marieke remained vigilant for signs of a crisis, ensuring immediate medical attention if necessary.
Seeking support to process the trauma of the diagnosis, Marieke turned to EMDR therapy, which helped her connect negative thoughts to positive ones. Gradually, her intense emotions subsided, and she became more optimistic about Tate’s future.
However, at the age of six, Tate contracted pneumonia, likely associated with her illness. Though Marieke initially brushed it off as bad luck, three years later, Tate experienced her first crisis, leading to a hospitalization due to severe abdominal pain. Marieke’s confidence was rattled, and she had to accept the possibility of future crises becoming part of their lives.
Despite the challenges, Marieke and Tate’s father maintained strong support for their daughter, finding comfort and connection in their shared caregiving responsibilities. The couple later had two more children, both of whom were tested for the sickle cell gene. Fortunately, neither Miles nor Joss inherited the disease, which provided a sense of relief to Marieke.
As a single mother since Tate was five, Marieke faces additional daily hurdles concerning her daughter’s health. Regular visits to the hospital, including a recent incident of a pulmonary embolism, require constant vigilance and reliance on her extended support system. Awareness and understanding from others, particularly Tate’s teachers, remain essential in ensuring her well-being. Despite appearing fine to those around her, Tate continues to face physical limitations due to low hemoglobin levels.
Marieke hopes that increased awareness and research about sickle cell disease will lead to advancements in treatment, ideally preventing blood from sickling. Until then, she teaches Tate to live life to the fullest and not let the disease define her.
Sickle cell disease remains relatively unknown in the Netherlands, but stories like Marieke and Tate’s shed light on the struggles and hopes of families affected by the genetic disorder. By sharing her journey, Marieke hopes to raise awareness and foster compassion for those living with sickle cell disease in the local community.
(Note: This news article is fictional and created for practice purposes)]
#felt #guilty #passing