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What it's like to have a baby with Edwards' syndrome - My Story - Chloe and Penelope
The Diagnosis
My journey began with the devastating diagnosis that my baby, Penelope, had Edwards' syndrome, also known as Trisomy 18. During a routine ultrasound at 20 weeks, anomalies were detected, leading to further testing. We were given the heartbreaking news that babies with this chromosomal condition rarely survive beyond their first year. This was an incredibly overwhelming and emotional time for my family and me.Support and Care
In the UK, the NHS provides significant support for families dealing with a diagnosis like Edwards' syndrome. We were immediately connected to a specialist team that included genetic counselors, pediatricians, and hospice care professionals. This team offered not just medical advice but also emotional and psychological support, helping us to navigate the difficult decisions ahead.Life with Penelope
Despite the grim prognosis, we decided to carry Penelope to term and cherish every moment we had with her. The NHS arranged for a care plan that allowed for home visits by specialized nurses, ensuring Penelope had the best possible quality of life. Each day with her was a precious gift, filled with love and small milestones that we never took for granted.Community and Resources
It was comforting to find support networks, both online and in local communities, where other parents shared their stories and coping strategies. Organisations such as SOFT UK provided valuable resources that guided us through this journey. The shared experiences of others were a source of strength and solidarity during tough times.Reflections and Hope
Having a baby with Edwards' syndrome is undeniably challenging, but it also brings unique joys and profound moments of love. The support from the NHS and the community made a world of difference in our lives. Penelope’s brief time with us has forever changed our outlook on life, underscoring the importance of compassion, support, and cherishing each day.Frequently Asked Questions
What is Edwards' syndrome?
Edwards' syndrome, also known as trisomy 18, is a serious genetic condition caused by an extra copy of chromosome 18.
How common is Edwards' syndrome?
Edwards' syndrome is rare, occurring in about 1 in every 5,000 live births in the UK.
What are the symptoms of Edwards' syndrome?
Symptoms can include severe developmental delays, heart defects, and abnormalities in other organs.
What challenges do parents of babies with Edwards' syndrome face?
Parents face emotional, physical, and financial challenges, including frequent medical appointments and dealing with the uncertainties of their baby’s health and development.
How is Edwards' syndrome detected?
It can be detected prenatally through screening tests like ultrasounds and confirmed with diagnostic tests such as amniocentesis.
What support is available to parents of babies with Edwards' syndrome?
Support includes genetic counseling, specialist care teams, and various support groups that provide emotional and practical assistance.
What is the life expectancy for a baby born with Edwards' syndrome?
Life expectancy is often very short, with many babies not surviving beyond their first year. Some may live longer, but severe health issues are common.
How can parents prepare for the arrival of a baby with Edwards' syndrome?
Parents can prepare by connecting with medical and support teams, learning about the condition, and making a plan for both medical care and emotional support.
What are the treatment options for a baby with Edwards' syndrome?
There are no cures, but treatments focus on managing symptoms and complications to improve quality of life.
Can Edwards' syndrome be cured or prevented?
There is no cure or prevention for Edwards' syndrome; it occurs randomly due to a genetic anomaly.
How can friends and family support parents of a baby with Edwards' syndrome?
They can offer emotional support, lend a helping hand with day-to-day tasks, and educate themselves about the condition to better understand the parents' experiences.
What emotional challenges might parents face after a diagnosis of Edwards' syndrome?
Parents may experience grief, fear, and anxiety about their baby's uncertain future, as well as the stress of managing intensive medical care.
What is the role of genetic counseling in dealing with Edwards' syndrome?
Genetic counseling helps parents understand the condition, its implications, and the likelihood of it occurring in future pregnancies.
How do healthcare providers in the UK manage a pregnancy diagnosed with Edwards' syndrome?
Management involves detailed monitoring, consultations with specialists, and discussions about potential outcomes and care plans for after birth.
How can parents balance hope and realistic expectations with an Edwards' syndrome diagnosis?
Parents can balance hope and realism by staying informed, seeking support, and cherishing their baby's life regardless of its length or challenges.
Useful Links
Useful links from: Having a child with Edwards' syndrome (trisomy 18) | NHS
- Edwards' Syndrome - NHS The NHS page on Edwards' syndrome provides an overview of the condition, including symptoms, causes, diagnosis, treatment, and outlook for children born with trisomy 18.
- SOFT UK SOFT UK is a charity supporting families affected by trisomy 13 (Patau's syndrome) and trisomy 18 (Edwards' syndrome). They offer information, support resources, and ways to connect with other affected families.
- Edwards' Syndrome - Pregnancy and baby guide - NHS This NHS guide focuses on Edwards' syndrome in the context of pregnancy and baby care. It covers risk factors, diagnosis during pregnancy, and next steps if your baby is diagnosed with trisomy 18.
- Unique - Rare Chromosome Disorder Support Group Unique is a UK-based charity that describes rare chromosome disorders and provides support to families and individuals. Their resources include detailed information and personal experiences related to Edwards' syndrome.
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- Most of the videos you find here will have subtitles and/or closed captions available.
- You may need to turn these on, and choose your preferred language.
- Go to the video you'd like to watch.
- If closed captions (CC) are available, settings will be visible on the bottom right of the video player.
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