Dear new mum of a premature baby or baby with special needs,

I know this isn’t what you expected—a baby born too early or with some medical complication(s) following birth, but this is now your and your family’s reality.

You’re feeling a myriad of feelings and emotions at the moment, not to mention the normal postpartum/postnatal mood swings. You’re tired, overwhelmed, in shock, sad, relieved (if your pregnancy was medically challenging and you worried about your baby each day), feeling robbed and at the same time dealing with all the unexpected and unplanned-for scenarios you’re now living with.

Of course you’re relieved your baby is alive and that makes it harder to rationalize your negative feelings and disappointment over your situation because so many others are not “this lucky.” Welcome to the equation, guilt.

All these thoughts and feelings are shoved (read: suppressed) into an imaginary box of emotions. The “box” is not tied up because new contents will be added on a daily, and sometimes hourly, basis. You hold onto these thoughts and feelings tightly because sharing them would deem you self-centred and selfish and none of this is about you. It’s all about your baby—about you looking after him or her and taking care of your newborn’s extra needs.

You’re going through the motions of feeding, expressing, visiting PICU, NICU or special care and not even stopping to think about how you’re feeling about any of this. You just keep busy and keep moving because you are a mother now and this is your job.

When you have time to digest any of what’s going on, or as you’re trying to sleep, thoughts race in and out of your mind. You might be thinking some or all of the following:

• You feel guilty that your body failed to carry your baby to term. You failed at the one thing your body was meant to do once you got pregnant and the pregnancy was viable.
• You feel guilty that your body didn’t create a “perfect” and “healthy” baby and that you’ve caused all the medical complications that may or may not occur following the birth.
• You feel immensely guilty for causing any developmental deficits or developmental delays to your baby.
• You feel angry and robbed that you are not having the postpartum/postnatal period you imagined during your pregnancy.
• You feel sad that you don’t have the balloons, stuffed toys, cards and flowers like the other rooms because you’ve told visitors that they cannot come to visit your baby since he/she’s in care.
• You feel robbed for not being allowed to hold your baby after the birth, because the baby needed to go to NICU, PICU or special care. And then guilty for not having all that skin-to-skin contact all the books and websites say is essential for bonding with your baby.
• You feel invisible at times as others take over the basic care (not medical) of your baby right in front of you – the midwives who pick up and undress your baby and change nappies all while you’re craving to just be the mother.
• You’re envious of all your friends that have had “normal” postpartum/postnatal periods and who brought healthy babies home after a few days in hospital, because you’re not going to have that experience.
• There is an air of sadness about and around your newborn that everyone’s ignoring or avoiding.
• You feel as though you don’t matter – people have forgotten that you’re also recovering from having a baby and don’t think to ask how you’re doing.
• You’re sad because you missed your imagined “newborn” photo shoot because by the time you get home from hospital your baby is no longer a newborn.
• You feel immensely sad seeing your friend’s newborn and toddler photos in your newsfeed because you’re unable to have or do this yet – or at all.
• You get upset when you see other babies feed well and be content following a feed because every feed you do is emotional torture. That’s if, of course, you are able to feed your baby because the midwives do most of the feeding when your baby’s in their care.
• If you have a toddler, you’re angry that he/she can’t go visit the new baby sibling because of germs they may have picked up at daycare that might jeopardize the health of your baby (or worse, other babies in care). You completely respect and understand this rule in your head, but your heart seems to be taking longer.
• You feel a pang of sadness seeing mothers walk their babies in prams because your postpartum/postnatal period is nothing like you imagined or hoped for.
• You get annoyed that people have no understanding or (at least) compassion for just how much harder you have it now (and possibly for the foreseeable future).
• You often feel like your baby’s nurse at times and not his/her mother.
• You get angry when you hear women complain how uncomfortable the last weeks/months of a pregnancy are, because you would take their place in a heartbeat.
• You want to ask yourself, “why me?” but you don’t feel you’ve got permission to do so.
• You get annoyed and defensive when questioned about your baby’s health or developmental delays because of the guilt you feel about it.
• You life is on hold and you don’t know how long this will be for.
• When you hear, “It doesn’t matter if it’s a boy or girl, as long as it’s healthy” said to someone around you, your stomach turns in knots because people don’t realize just how meaningful that sentiment is and how much you wished for the full-term baby or good health.
• Images with mums and their newborns will forever upset you, as this was not the experience you had.
• People are quick to ask you about extending the family again, with little or no regard for anything you went through or are still going through on a daily basis with your baby.
• The mothers in your mothers’ group seem like distant strangers because the only thing you have in common is that you both own prams/strollers. Nothing about your experience is the same.
• You get agitated when other mothers discuss seemingly insignificant things around you, because your priorities are miles apart.
• You feel lonely.

Your nervousness can be debilitating, you’re always on edge and absolutely everything overwhelms you. You don’t feel as though you’re allowed to feel anything other than being grateful and blessed with this little life. You’re unable to sleep when you can—that is, after all the expressing, steralixing, cleaning, administering and monitoring—and the sleep deprivation is all too much to cope with. You don’t know how to just be a mum to your baby because of all his/her other needs and all the things you have to do and deal with. The adrenaline of your situation keeps you going and going until you finally crash. And when you do, you STILL don’t think you have permission to do so.

To my dear (new) mum, please know and understand that you have a lot to deal with now (and possibly in the future*) and your feelings about your situation are understandable, permissible and valid.

When you’re later diagnosed with postpartum/postnatal depression and/or anxiety (because you were finally honest with yourself on how you were really feeling), you will feel immense relief because you’ll be able to get the help you need in order look after yourself. You will be able to discuss the racing and irrational thoughts and the trauma with someone who will listen and who cares, and they’ll be able to provide you with strategies to turn the voices down and, in time, off for good. You might need the aid of medication (or, as I call it, Ventolin) because it too will help you breathe. There is absolutely no shame in getting help or admitting you’re not ok because what you’ve been through and what you’re going through is hard and at times, frankly, just sucks.

Your reasons or circumstance for suffering any postpartum/postnatal mood disorder doesn’t matter, but what I’m about to tell you does. I will keep reminding you in each and every post I ever write about postpartum/postnatal mood disorders because it’s true and you need to hear it:

I want you to know that you’re not alone.

I want you to know that help is out there.

I want you to stop believing everything you think.

I want to tell you that you will get through this.

Be gentle with yourself, as you will be delicate for some time. You must give yourself this time. Allow yourself to grieve over the loss of your imagined post-birth experience and, if you have this experience more than once, allow yourself to grieve the fact that you will never have the post-birth experience that others do and that you always wished for.

I hope that the passage of time treats you well and your recovery is triumphant. Be patient with this process; your recovery will be full of highs and lows, achievements and regressions. The ride will be bumpy, my friend, but we’ll be here for you, cheering you on and supporting you on your good days and holding your hand and throwing you a lifeboat on the hard ones. No matter what the future holds, you’re strong, you’re fierce and an admirable woman and mother.

Sending you love and hope always and forever,

Yuz (Warrior mum and survivor)

* Research has shown that mothers with premature babies or babies with special needs often suffer from Post-Traumatic Stress Disorder (PTSD), which often goes undiagnosed until many years after the initial trauma or experience.

Yuz Rozenblum is an Australian mum of two kids aged five & three (both born at 36 weeks), a PPMD survivor & passionate for speaking up about all postnatal/postpartum mental illness (PPMDs) & hoping to reduce stigma. Yuz is joint admin for the #PPDChat FaceBook support group & various other PPD/PPA closed FaceBook groups, is a Den Grandmother for Mama’s Comfort Camp FaceBook group & started two closed group dedicated to supporting those that have had a PPMD & planning, TTC or having another baby, called ‘Baby After a PPMD’ & another group to support those mothers that still live with any sort of mood disorder after the ’12 month’ postpartum/natal period while raising their family, called ‘MMD’s Friendship Circle (#MMDFC)’. Yuz is also admin to LTBM Australia (an Australian-based online support group for families affected by Laryngomalacia, Tracheomalacia &/or Bronchomalacia, a condition her son was born with & suffered from. She blogs at http://www.notjustaboutwee.com & can be followed on Twitter @notjustaboutwee. 

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