Tag Archive: postnatal support

  1. An Unexpected Postnatal Diagnosis

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    Most of us have dreamed of being a parent. We imagine how wonderful it will be, what our children will look like, spending holidays watching them play on the beach. We know that it’s not going to be easy, of course – the sleep deprivation, sacrificing your social life, the everlasting ‘mum guilt’. But nonetheless, we crave it.

    Having your baby diagnosed with a disability may feel like all your expectations, hopes and dreams for the future have just come crashing down around you. Everyone will deal with an unexpected diagnosis differently. There’s no textbook here, and struggling with the news is just as valid as taking it in your stride. As well as processing the potential long-term implications, you may also be dealing with a prolonged stay in hospital before being able to take your baby home. Don’t underestimate how hard this can be.

    You will probably go through a horde of emotions; grief for the baby you thought you were going to have, anger that it’s happened to you, sadness that life no longer looks the same. These feelings might linger for weeks, months, or even years; it’s a process that may take time, but you WILL get to a point of acceptance, and contentment.

    If you’re in the early days following a diagnosis, and you’re not really sure which way is up, here are a few tips to guide you along that road to contentment.

    Communicate

    Communicate openly with your partner, your family, your friends. A lot of people will be unsure about how to react to the news too – it’s hard for them to land the balance between being supportive and understanding, without tipping over into pity and patronisation. Take time to explain things to people. Having them treading on eggshells for fear of saying the wrong thing is only going to make them feel awkward, and you feel frustrated. Have open conversations rather than bottling up little irritations; there’s only so much that bottle will hold.

    Acknowledge your true feelings

    Be honest with yourself from the start. When there’s a flood of tears sitting just behind your eyes and someone asks, ‘how are you?’, let those tears escape. There’s no shame in feeling overwhelmed, scared, or desperately sad. Remember emotions are complex, and not mutually exclusive; you can love your baby immensely and still feel angry. Mental health is at the forefront these days and there’s lots of support out there. Your GP or Health Visitor will be able to signpost you to the most appropriate help if you need it – don’t be afraid to ask. There are also services you can self-refer to if you prefer, such as Home-Start or your local NHS Improving Access to Talking Therapies (IAPT) service. Click here to search for your local service.

    Keep a diary

    You may never read it again, you may dig it out in 10 years and see how far you’ve come, or you may publish it! Regardless, the simple act of writing can be a helpful way to process things. From facts, feelings and helpful advice you have been given, to ignorant comments you wish you’d never heard, writing it down helps. And it’s a great way to pass help pass those long days sitting beside an incubator in a neonatal intensive care unit (NICU).

    Surround yourself with the right people

    It can be exhausting explaining things over and over, to people who love you and want to support you, but just don’t quite ‘get it’. Having a conversation with someone who knows what sats, UACs, CPAP, Nutriprem and SaLT* are, will be a mighty relief. Find these people. There’s no substitution for someone going through the same thing as you – whether that’s talking to other parents during your time in NICU, or finding local disability support groups. You will probably feel more comfortable talking about your true feelings with these people, without the fear of being judged. People on the same journey will become an invaluable source of knowledge, advice and support, and lifelong friendships often bud from these unique shared experiences.

    Embrace the highs

    Parenting is riddled with highs and lows. I think it’s fair to say that if you have a child with special needs, the lows will be lower, but the highs will be higher. You will see other typical kids smashing their milestones without any real effort at all. Yes, their parents will be proud. But as a parent of a child with a disability, when you see the determination, the hard work, the strength it takes for your child to grasp that toy, or to take their first step, you won’t just be proud, you will feel like they have just won an Olympic medal. Embrace these highs, they are humbling and beautiful.

    Don’t compare your baby to others

    This is easier said than done, and it might take years before you can truly do it! Seeing other children race ahead in their development compared to yours is hard, there’s no denying it. You may find social media can be very isolating in these circumstances, and giving yourself a break from it might be helpful. Try to concentrate on your child alone. See their progress, accept it might be slower or more limited, and remember how rewarding those achievements are going to be.

    So, you may have found yourself on a different path to the one you expected, a member of a club you didn’t anticipate joining. But having a child with a disability will open up a new world for you; a world of humility, appreciation and gratitude. The experiences you will have, and the people you will meet along the way are going to enrich your life in ways you haven’t yet imagined. Take a minute to read this poignant short story, ‘Welcome To Holland’ written by an American author, Emily Perl Kingsley, who had an unexpected diagnosis of Down Syndrome when her son was born. It beautifully captures the experience of receiving a diagnosis, and serves as a metaphorical reminder to embrace life’s winding path. Holland is beautiful, too.

    Sophie Platt lives with her husband, two young girls (Megan and Jessica), and their daft spaniel, Louie. While her post-natal journey with Megan was very typical, Jess was born 2 months prematurely, with a congenital heart defect and Down Syndrome, giving Sophie first-hand experience dealing with a wide range of circumstances. When she’s not wearing her ‘mum’ hat, Sophie works as a small animal Veterinary Surgeon, and enjoys dabbling with some veterinary and medical writing in addition to her clinical work.

    *Sats = oxygen saturations; UACs = Umbilical Artery Catheters, used to measure blood pressure in tiny babies in neonatal care; CPAP = Continuous Positive Airway Pressure, a form of breathing support used in neonatal units; Nutriprem = an infant milk formula designed for premature babies; SaLT = Speech and Language Therapy, also useful for assessing a baby’s swallow

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Privacy Policy

Updated: 18th May 2023 This privacy policy explains how Mumie ("we" or "us") collects, uses, and shares information about you when you access or use our website or web application ("App")  collectively our "Services".  Mumie is committed to complying with data protection and privacy law. We take your privacy seriously and are committed to protecting your personal information. Please read this policy carefully to understand our practices regarding your personal data.

Information We Collect

We may collect the following types of information when you use our Services:
  • Personal Information: We may collect personal information, such as your name, email address, baby's date of birth and contact information when you create an account.
  • Health Information: We may collect health information such as your demographics and aspects of your medical history to provide you with personalised health recommendations and to help you track your progress
  • Device Information: We may collect information about the device you use to access the App, including the type of device, its operating system, and other technical information.
  • Usage Information: We may collect information about how you use the App, including your interactions with forms, features and content available through the App.
  • Website usage: Website users do not create accounts, however, may still be subject to certain passive data collection. Such passive data collection may include cookies (please refer to separate Cookie Policy), IP address information, location information, and certain browser data, such as history and/or session information.
Mumie is intended to be used by women who have recently given birth. It is not intended to be used by children.

How We Use Your Information

We may use the information we collect for the following purposes:
  1. To Provide Services: We use the information to provide you with the services offered by the App, including personalised health recommendations, and to improve the quality of those services.
  2. To Communicate: We may use your contact information to communicate with you about our Services, including updates, promotions, and other news.
  3. To Improve the App: We use the information to understand how users interact with the App and to improve its design, content and functionality.
  4. To Comply with Legal Obligations: We may use your information to comply with legal obligations, such as responding to court orders or complying with applicable laws.
We will store this information within our App so that you can have access to it for as long as you are our registered user. We may also use it for statistical and research purposes, but only in an aggregated and anonymised format (i.e., in a format that does not allow us to identify who this information relates to). The information you provide will be processed on one or more of the following lawful bases:
  • The consent you provide to us at the point of collection of your personal information, including explicit consent for processing special personal data to include health data
  • The performance of the contract we have with you
  • The compliance of a legal obligation to which we are subject
  • The performance of scientific research, preparation of statistics or public health activities
  • The legitimate interests of Mumie, you or a third party, where not overridden by your interests, fundamental rights or freedoms

How We Share Your Information

We may share your information with the following types of entities:
  1. Service Providers: We may share your information with service providers that help us operate the App or provide the services offered through the App.
  2. Business Partners: We may share your information with business partners, such as insurers or healthcare providers, to provide you with more personalised health recommendations.
  3. Legal Authorities: We may share your information with legal authorities, such as law enforcement agencies or courts, to comply with legal obligations or in response to a legal request.
We may share your information with other parties with your consent. Your information will not be transferred out of the UK.

Third-party links

The App and/or website may include links to third-party websites, plug-ins, and applications. Clicking on those links or enabling those connections may allow third parties to collect or share data about you. We do not control these third-party websites and are not responsible for their privacy notices and practices. When you leave the Web App or Website, we encourage you to read the privacy policy of every website or app you visit. In the event of acquisition of Mumie, your data may be shared with the new owners.

Marketing

We may use your contact details to provide you with information about our work, events, services and/or activities which we consider may be of interest to you. Where we do this via email, SMS, or telephone, we will not do so without your prior consent. You are free to opt out from receiving marketing communications by following the "unsubscribe" link in our email, or by contacting us directly. We will get your express opt-in consent before we share your personal data with any third party for marketing purposes.

Security of Your Information

We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used, or accessed in an unauthorised way, altered, or disclosed. Your data will be stored on a secure web server, with the app hosted on a trusted host provider with regular security update enhancements. Your personal data can only be accessed by those within Mumie who have a genuine need to know. They will only process your personal data on our instruction, and they are subject to a duty of confidentiality. We have put in place procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so. While we will use all reasonable efforts to safeguard your personal data, you acknowledge that the use of the internet is not entirely secure and for this reason, we cannot guarantee the security or integrity of any personal data that are transferred via the internet. We can not be held responsible for unauthorised access or use of your information that is beyond our control.

Data retention

We will only retain your personal data for as long as reasonably necessary to fulfil the purposes we collected it for. We may retain your personal data for a longer period in the event of a complaint or if we reasonably believe there is a prospect of litigation in respect to our relationship with you. Typically, we will not keep your personal data for longer than 5 years after you have closed your account on our App or stopped using it, after which point personal data will be destroyed. We may anonymise your personal data (so that it can no longer be associated with you) for research or statistical purposes, in which case we may use this information indefinitely without further notice to you.

Your Rights

You have the right to access and control your personal information, including the right to be informed about what data we hold, the right to access this data, the right to rectify inaccurate data, the right to erase your data, the right to restrict or object to your information being used, and the right to move your data to another business. If you have any questions about your rights or would like to exercise your rights, please contact us using the information provided at the end of this policy. When signing up to our app you will be asked to provide your consent to share your information. You have the right to withdraw this consent at any time and may do so by contacting us. You have the right to make a complaint at any time to the Information Commissioner's Office (ICO), the UK supervisory authority for data protection issues (ico.org.uk) We would, however, appreciate the chance to deal with your concerns before you approach the ICO so please contact us in the first instance.

Changes to This Policy

We may update this privacy policy from time to time.  If we make changes, we will notify you by revising the date at the top of the policy and, in some cases, we may provide you with additional notice (such as adding a statement to our website homepage or sending you a notification). We encourage you to review the Privacy Policy whenever you access the Services or otherwise interact with us to stay informed about our information practices and the choices available to you. Your continued use of our services after the effective date of the updated policy will constitute your acceptance of the revised policy.

Contact Us

The Party responsible for the processing of your personal data is Mama Health Ltd. The Data Protection Officer (DPO) is Dr Laura Davies. The Data Protection Officer may be contacted using the contact us page on the website. If you have any questions or concerns about our privacy policy, please contact us using the contact page on our website or by emailing us at hello@mumie.health
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