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Receiving An Unexpected Diagnosis in Pregnancy.
- Eliza
- Apr 7
- 4 min read
Navigating an unexpected finding in your unborn baby
Pregnancy is often a time to look forward to the changes ahead and imagining what the future holds. There are expectations around an imagined extended family and for some, it can be a long road to achieve this.
The first trimester brings the news that you are expecting... sometimes unexpected, other times planned and there is hope of what lies ahead. You may have received your due date from an early ultrasound and you may even know the sex of your baby.
You may have also had an ultrasound towards the end of the first trimester and you are excited to be told that from what they can tell, 'all is going along smoothly'.
In the second trimester, the 20 week morphology or 'anatomy' scan will be offered which looks for the structural development and growth in your baby. At any time during these scans an unexpected finding (or abnormality) may be found which may be mild or serious resulting in your baby not surviving through the pregnancy or following birth. At this point, discussions around whether to continue the pregnancy or not will be part of this changed world for you. This is an extremely distressing time for a parent(s) where the news often comes as a shock.
Even when the diagnosis is clear, there is often unanswered questions and uncertainty around what their child's future will look like.
Unless the abnormality is clearly defined and the outcome known, the weeks following a diagnosis, are usually filled with seeing specialists, more tests and trying to make a decision that no parent wants to make.
“It felt like every option was wrong. There was no ‘right’ decision, only the least painful one.”
What Parents May Feel or Experience
Parents can experience a range of thoughts, feelings and emotions from shock, distress, confusion, guilt, apprehension and uncertainty. No one will be able to guide them to make the 'right' decision and it may feel like the world is on their shoulders as they navigate receiving information and making the decision whether to end the pregnancy or continue it.
Parents can find it difficult to tell family, friends or work colleagues about what has happened during or after this news. Many are fearful of being judged for the difficult decision they made for their child and worried that people won't understand.
“I wish people understood that this wasn’t about not wanting a child — it was about protecting them from pain.”
It is important parents are given the time to consider their options, seek out support, and that they are given ample opportunities to ask questions.
"We were grateful for the 4 weeks we had to slowly ask questions of the specialists who we saw more than once, so that when the time came to induce our baby girl, we were devastated but we knew deep down we were doing the right thing by her".
What Comes Next?
Whether you decide to continue or end the pregnancy, it is understandable and common to want to reach out for support - to health professionals who can give you guidance and information and/or others who can support you in this journey such as trusted friends and family.
You do not have to face this alone. There is support available.
Support
Through The Unexpected
Through The Unexpected works to protect the mental wellbeing of people who receive unexpected news regarding the health, development or genetics of their unborn baby.
Red Nose Grief & Loss
Red Nose Australia provides specialised, free support for families facing an unexpeted fetal diagnosis, including termination for medical reasons (TFMR), stillbirth.
Centre of Perinatal Excellence (COPE)
COPE is Australia's peak body in perinatal mental health.
Antenatal & Postnatal Psychology Network (APPN)
The Antenatal & Postnatal Psychology Network is a Melbourne wide network of independently practising psychologists. APPN psychologists are trained and experienced in supporting women and couples who are struggling with pregnancy decision making following an unexpected fetal diagnosis.
Prenatal Screening
The Prenatal Screening site better enables prospective parents to make informed choices about screening, diagnostic testing and continuing or terminating a pregnancy.
Health Centre for Genetics Education
When a condition is found in an unborn baby: Information for families:
When your unborn baby has a problem: Managing the weeks ahead:
Genetic Alliance Australia (GA)
Genetic Alliance Australia endeavours to facilitate contact between families/individuals affected by the same, or similar condition, and/or provide information about relevant support groups both nationally and internationally. GA also deals with enquiries about services and facilitates ongoing support for individuals, families, health professionals and other interested groups. GA has an extensive rare disease database representing 1400 conditions and over 3500 individuals and families affected by genetic conditions.
Other Support
Your Midwife
Your Obstetrician
Your GP
A mental health practitioner
Resources
A Little Help From Jack - From Remy
A practical resource companion for those facing a medical termination of pregnancy.
Pink Elephants Network
Termination for medical reasons - Stories from families:
Helpful Podcasts you may choose to listen to
There are many stories about unexpected diagnoses on 'Once Screened Every Minute'.
For all episodes, please visit:
One Screened Every Minute - Podcast
Naomi & Al's - share what they have learnt about pre-natal screening and faced the decision to end their pregnancy.
The Still Mama Tribe - Podcast
Kristen's story of unsurpassable love and the decisions no parents should be faced with.
One Born Every Minute - Podcast
Marian takes us step by step through her first pregnancy with baby Emmy who had a rare genetic disorder, confirmed at 29 weeks gestation after weeks of tests and investigations. Marian and her husband chose to terminate for medical reasons.
Caitlin - a diagnosis of anencephaly and the decision to end the pregnancy.
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