How does the birth of premature children impact on parents?

Hi, my name is Angela Sheather.  I am a mother and a Psychologist. All three of my boys were born premature.  My eldest at 34 1/2 weeks and my twins at 27 weeks.  Throughout my experiences as a preterm mother, I always found it amazing how similar situations challenged and impacted parents in extraordinarily diverse ways.  What was different? 

Over the years I have privately researched the effects of preterm birth, searching for the answers to the many questions I have. This is where I came across the gap in the public literature around how parents cope and their level of social support. As a premmie mum, I am also interested in the question, if preterm parents, both mothers and fathers, have a higher rate of post birth mental health diagnoses compared to their term birth counterparts; and if they do, what are the diagnoses?  When the opportunity came along to investigate these questions, I grabbed it.   

This opportunity came through enrolling in a Masters of Clinical Psychology degree with Charles Sturt University.  As part of my thesis (research), I need to get insights from parents of children born premature. I am looking for parents, both mothers and fathers, over 18 years of age, whose children are 4 years or younger and are no longer in the NICU.  The survey takes approximately 20-30 minutes to complete. It needs to be completed in one sitting, as it cannot be saved to come back to later. The survey is completed anonymously to protect your confidentiality, and can be simply accessed by any computer with internet connection.   

If you would like to participate in the research, please click on the link below.   Your time and input will be greatly appreciated.

https://www.surveymonkey.com/r/XRPVXVT  

The Black Hole that is PND ~ A personal story

Guest blog post by Kyran R.

After an awful 19 weeks I was starting to feel human again. Most days were spent in bed so unwell or head in the toilet bowl.  Finally at 19 weeks I spent 3 days in hospital hooked up to a drip and some amazing anti nausea medication, that I wished I had from 5 weeks as I may have been able to function. Finally feeling normal with a baby bump, I went into crazy nesting mode.  Everything had to be done and done like yesterday. We got the nursery painted and lucky enough my sister inlaw had a baby girl just 6 months before I fell pregnant, so we had just about everything we needed passed onto us. The house was finally clean again and my miserable mood was easing up along with my morning sickness.

At 24 weeks I was getting worse in maternal nesting mode.  Full of energy again I was starting my stressed out OCD thing, that happens when I'm stressed.  I like it cause things get done but I feel for everyone around me. It was so bad that I was go go go and 24 weeks 6 days along I was trying to ignor what felt like contractions cause I just needed everything done. I only had 12 weeks until this baby was coming.

We had people over and I'd had my beautiful niece for a few hours that day while my sister inlaw was moving house. I loved having her and because I had awful morning sickness for so long I finally enjoyed doing things again.  My little bubble of love niece must have warn aunty out I thought. Then later into the evening after everyone had gone, I remember sitting down with my watch timing pains, the idea that I was in labour was so far from my mind as it was so early, yet I have had a number of complications in the past aswell as miscarriages so I quietly went to the bedroom and called the pregnancy help line.  I told them everything I was feeling, pressure in my pelvis, tightening in my tummy etc.  After a few more tightenings I couldn't stand up through them, maybe it's just Brixton hicks I said to the nurse on the phone, she was also timing my contractions and sent an ambulance straight away.  'Babe babe umm the lady on the phone has sent an ambulance she thinks I'm in labour', he was a little shocked.

Calling around to get someone to come watch my daughter so he could come with me, I assured everyone it was nothing I'm feeling fine really I am, I'm just getting them to check me out that's all. I went in the ambulance and my partner stayed and waited for our friends to come watch my daughter and then took the car up to the hospital. I was honestly thinking I'll be back tonight, it's nothing, it's so early really it is nothing.  I like everything to be organised for my daughter when I'm not around cause I'm a little OCD with her aswell, my child my job.  Handing the reigns over to everyone eles with no notice would send me nuts. 

I was put into a cosy little room with a TV and feeling quite relaxed after having a hole heap of tests done and given some pain relief for what they kept calling contractions. To me at this stage they were just little pains and contractions happen when your in labour and I am still 12 weeks away so they are not contractions. After having a few tests and a scan to look at baby the doctors left me alone for a while.

We quitley watched TV, rang my daughters Uncle and Aunty who were sitting at home with her letting them know I'm okay when the doctor walked in to tell us that the tests had come back high positive for early labour. My heart stopped, I didn't hear anything else he said after that, as my heart went a million miles an hour and with the thought in my head, she won't survive if born now, it's to early, crying in my partners arms.  I couldn't get a breath in, my chest was going crazy, a few words went in from the doctors and nurses, bed rest, steroids, pain relief, it was all very blah blah blah.

Over the next few days they were able to stop contractions.  I hadn't dilated anymore than 2cm so just needed to rest and only rest. I had spent the first 19 weeks in bed for this pregnancy with morning sickness and finally felt like a human again and I have to stay in bed even though I felt fine?? I ended up 5 days into bed rest at hospital feeling lost.  I wanted to go home to my daughter who was staying with her Dad and step Mum while I was in hospital.  My contractions had stopped and I'd still not dialated any further so I got the okay to go home.

If contractions started again I would be on bed rest until the end. I was home for a few days before it was all happening again at 27 weeks 5 days.  I had my hospital bag completely packed this time.  I left my partner sleep as long as I could, made a call to the hospital, they had me on their records from last visit so they told me not to take too long.  'Babe babe babe', I whispered, 'I'm having contractions again'.  He jumped up shirt on, grabbed the keys, 'let's go!'

I knew this time I wasn't going home, my daughter was organised and happy staying with her Dad.  Her Nan and Pop were over for holidays so she had Nanny time. It helped me being organised going into hospital this time. This time around they gave me nothing to stop the contractions.  I had already had steroids to help babies lungs develop. By this stage I felt like she was going to fall out.  My pelvis had so much pressure I couldn't really bare the pain.

They kept me in the labour ward as I was having regular contractions. I told my partner to go home and rest as I didn't think anything was going to happen. A couple more days in hospital without even knowing my water had broken, they wanted to hold me off as long as possible, the baby wasn't in any distress and I was handeling what pain I was in okay.

28 weeks 2 days, I was feeling like hospital was my second home.  I was missing my partner and my daughter so much.  I curled up crying once again in my partners arms, it was starting to get to me. The midwives kept trying to talk to me and I just put my head down, even when I was listening nothing was going in. How can you prepare me for this situation really? That night I was so misrible and I could see how tired my partner was.  Tomorrow was Anzac Day so a day off work for him, he looked like he needed it. Trying to juggle my daughter for me, work, paying the bills, and running back and forth to the hospital he was exhausted. I sent him home. I needed to curl up in a ball myself anyway.

Contractions come on quite quickly that night, I didn't want to phone him as I knew he would have just gone to sleep. It was a busy night in the labour ward, I could tell they were under staffed so I just kept quiet when they took me back down as I had been in and out so many times I was thinking this time was nothing like all the others.  They had already checked me a few hours ago and I hadn't dialated more that the 2 cm from almost 3 weeks ago. My midwife that was with me rushed off to an emergency c-section so I had another midwife then another.  None of them had examined me. I'm little and look like a sook but to be honest I handle Mother Nature better than a little scratch so I guess they were all expecting to see a 5 ft nothing screaming if I was in pain, maybe that's why they overlooked me that night in the labour ward? I don't know.  I just wanted to go back upto the room I had just paid TV for and go to sleep, contractions or no contractions.

Finally at almost midnight the midwife asked how I was feeling.  She too expected to send me back upstairs until she did an internal to discover I was 8cm dilated, baby was in breach position and I had started bleeding internally from a tear in uterus.  I was in trouble!  More so myself bleeding, not bub.  They all started rushing around and when the doctor came in he told me they had to do an emergency c-section.  

I fought with him, 'I want to push, I don't want you to cut me open!'  'Miss', he said, 'It's too dangerous, you may bleed out.  We need to get in as soon as possible.'  2 minutes of life and death talk from a very well respected doctor in the maternity hospital shut me up and soon they started to prep me. A woman dying in child birth is so uncommon that it never really sunk in to me how dangerous it was for my body. That it really could have happened. I knew from day one falling pregnant it was a risk due to previous complications but again I never really thought it would happen to me

I called my partner, 'You need to come now.  Don't waste any time, just get the camera and get in the car.  They are taking me through now.' I was given something to help baby and it made me feel so ill, I felt like death. A panic attack started again just like it did early on when they told me I was high risk for early labour. Crying I was asking my midwife if bub was going to be okay.  They can't tell you if a baby born at 28 weeks is going to be okay yet this midwife was amazing.  She calmed me down with her own personal touch, meditation, breathing techniques, no one can calm me down when I'm a mess, but she did. She held my hand until they took me into the operating room.

Layla being taken to NICU.  I tried as hard as i could to reach her as they rushed her away.

My partner was in his scrubs holding my hand and stayed so positive throughout this whole process.  We had already had the talk about what if this happened, so he knew to go straight with baby.  It felt like only mintues of being in the room she was out.  I couldn't see anything, or hear anything.  I was stuck on the table and all it wanted to do was see her.  She was soon taken to NICU.  They let me glance at her when taking her out.  My partner looked at me, as if to say,  'What do you want me to do? Stay or go?'  Without saying anything he knew I wanted him with her.

1:26am a little baby girl weighting in at a tiny 1134 grams was born, our little Layla Lane. I was taken out to recovery and met by my sister inlaw and mother inlay.  As soon as I woke up I looked at them as if to say, take me to her. The nurses in recovery couldn't calm me down once I woke up.  Take me to see my baby. If you don't take me I'll rip all these cords out and take myself!  Little did I know I was still paralysed from the epidural, the most polite nurse asked me kindly not to and as soon as I can go in they will take me. They took me back upstairs to a ward bed. I just watched the time, I knew nothing about my baby.  Did she have hair?  What colour was it?  How big was she?  Does she have any complications? Who does she look like? No one was telling me anything. The midwife who was looking after me in my room that night really deserved a strong drink at the end of her shift with me.  I was not going to sleep untill they took me down stairs.

She recommended I take something to sleep and relax as my anxiety was at its worst.  I'd just had a baby cut out of me and taken away, it's just not natural. I want to see her, I refused all medication, even pain relief untill I got to see her. They called the nursery where baby was and they said I could go down at 5 am, I waited until the clock hit 5 am and somehow dragged myself out of bed, pressed the buzzer and started to walk across the room when I realised my legs were wet.  When I looked down I was standing in a pool of blood, the look on my midwives face when she saw me and hit the emergency button for help was not good. I had a really bad attitude that night. 'I'm fine', 'your not fine' yelling back at me very frazzled.  This poor woman couldn't wait for this shift to be over. 'I'll take you down as long as you rest', in a very blunt school teacher like tone. I just burst into tears "I just want to see my baby please" I can't describe the pain I felt at that time, it's was like when doing the c-section they cut a part of my heart out and took it along with my baby.

After fighting the nurses, 3 hours after my c-section i finally got to go into NICU and see her, my first look at our tiny baby.

She wheeled me down stairs and locked door after door, this place is quite well locked up, no one is going to get to my baby I was thinking, sigh of relief. I'll never forget walking into NICU, the sounds, smells, sights it really does change you forever.  Seeing tiny hand size babies on life support machines, Mums and Dads crying beside bedsides, stressed looking nurses, doctors everywhere. I thought you only saw doctors on rounds, not in NICU, there are doctors at arms length for these tiny fighting babies.

My partner had named her Layla, I kinda remembered that part before she was taken away. As my midwife wheeled me into the back corner of the room to where our Layla was I felt cold shivers, I could hardly see her behind all the tubes and cords all over her face and body.  'Is she okay?' I asked tears falling down my face.  'She's doing really well', her nurse said and held my hand before needing to rush to a beeping machine from her other baby. I didn't know what to think or feel sitting beside her bed. She was just so little, yet she was the biggest baby in the room. Watching your child get needles or have blood tests breaks your heart, seeing them put tubes in a tiny babies body is like having your heart stabbed. 

My first hold.

My partner's first hold, weeks in.

Still too little to breastfeed but i remember that natural feeling, looking down at her wanting to feed her myself.  Still tube fed at this stage and too little to feed.  I remember my heart breaking every time she opened her mouth like this wanting to feed her myself but not being able to.

As the first few days passed Layla improved very quickly, she was taken off CPAP which was to help her breath and was breathing all on her own.  She was taken out of the high level NICU by day 4, it was a huge relief. It was a lot more relaxed in this part of NICU, nurses seemed happier, many Mums around the room had their babies out for cuddles and feeding. I crashed big time with baby blues, all I wanted to do that day was cry and cry and cry. I was being monitored for postnatal depression as they said I would be high risk, I brushed it off like nothing.

Now 5 months later I wish I had listened.  What they were trying to say was important. We had 2 steps forward 1 step back with Layla throughout her NICU stay. Yet we were extremely lucky, she had no major complications. Layla was basically in there to fatten up before coming home. It felt like the longest time of our life, at week 5 my milk started to dry up, I continued to express and express yet I was getting nothing for her, the thought of not ever being able to feed her was breaking me.

Everything so far was so unnatural. Everything at home ran as normal, my partner went to work every day, I took my daughter to school, yet I'm at home with no baby, what's so normal about that? I have this naturally maternal buzz of energy and no baby to wear me out, there was many days I couldn't bring myself into NICU. It was wearing me down, I was in a size 6 pants again just weeks after having a baby, not eating much at all and running around not really knowing what I was doing with myself.

Layla at 6 weeks old.  My oldest daughter Montanna tears up meeting her first sibling for the first time.  I can now look back at these photos and see what a beautiful moment it really was although at the time i felt emotionless and lifeless but i put on a fake smile and took photos that are now my favourite photos in the whole house.

When Layla was 6 weeks old she was transferred to another hospital.  That was my break down day. I can't even really remember that day to be honest, my partner went to the hospital without me as I was waiting for my daughter to get home. I had to pull myself together the next day as finally my older daughter was aloud to see her baby sister for the first time.  She was both scared really excited to meet her sister. When I took her in and watched her as she held her sister and started to tear up, 'I just love her Mum', she said. It should have been a moment that normally would melt my heart yet I just felt numb. I smiled and took photos of them together as even though I wasn't feeling anything I knew it was a moment we all wanted to look back at. All I really felt like doing was sleeping, if I slept 1 day away it would be a day closer to having Layla home and that was what was missing our baby. This is our first baby together, my partner has no other children so this is his first time.  To him he knows no different, this is the way it has happened and to him this is our normal.

Montana is almost 8, although she was 4 weeks early she was an easy pregnancy and a natural birth with no complications, the way it is meant to go, the way many parents expect it should all happen. In many ways his not knowing attitude has brought me back to earth throughout this situation as he looks at his daughter, puts her in his hand "hand size baby" and loves her just the way she is regardless of the situation. His love is unconditional and beautiful to see, he always says she's perfect, and yes she is. I just at times feel ripped off as a mother and even feel as though I failed her. I had one job and that was to carry a baby into this world and my body couldn't do it. I have many times over felt I failed my daughter, because my body couldn't carry her she had to have one of the hardest starts to life, it's my fault!!

By the time Layla was 8 weeks old I gave up on the breast pump, that yellow pump and my alarm going off to tell me to express milk just didn't do it for me. I bet myself up but I really wanted to throw the machine out of the window when my nipples started to crack and I'd push through the pain of expressing to get at times 2 drops of milk. Not even enough to put in her feeding tube. On powder baby milk she fattened up very fast, at 11 weeks old she was fat enough to come home. 

The week Layla finally came home, nice and chubby at 3 months old.

It was the call we waited so long for our baby is coming home. I felt quite relaxed bringing her home, this is where she is ment to be. Right beside my bed waking me up every 3 hours. The first few weeks of bubba girl being home were extremely challenging, she was very unsettled with reflux and a very slow at her feeds. It was taking me a good hour at times to get 60mls down then the reflux would kick in after and it would be another hour before settling down to sleep, I'd quickly jump back into bed and before shutting my eyes I would here her stirring as if to say I'm due for another feed soon. I was feeling like a robot, my partner would help on weekends by getting up to the 5 or 6am feed so I could continue to sleep a little longer and even if bubba girl would wake around 4am through the week he would feed her before starting work at 5 am cause he knew I had to organise our other little miss for school.

Over the weeks bubba started to settle and sleep longer and began 4 hourly feeding so it gave me a chance to sleep longer than half hour at a time. I started to get into the habit of dropping my eldest at school and coming home and resting with bub, even when she started to sleep all night 6-8 hours I still felt like I needed more sleep and before I knew it the curtains in my house stayed closed all day and I didn't want to go anywhere or see anyone. I was snappy at everyone, the house was a mess, dinner was never cooked  and I was falling apart.

I saw my GP and was put onto anti depressants for postnatal depression when bub was 3 months old but 2 months latter I was still feeling flat. When I went back to my doctor he increased my dose and still no improvement, I felt lifeless. I just managed to have the energy to feed bub.  It was as though I was living in a lifeless body. I didn't like myself very much at all so I isolated myself from everything and everyone as I was too proud to admit things weren't quite right. A new baby is meant to be a joyfully time, you need to snap out of it there are worse things in the world going on, baby is fine and home now, comments like that made me angry so I felt it was best to stay away from talking to anyone because I was worried my reaction to their opinions would come out hurtful.  Emotionally everything was to much.

Montanna just thinks the world of her sister.  I'm so glad Layla has such an amazing big sister to love and look up to.

I would yell in my head "snap out of it" yeah right I just went through life or death to have a baby who was cut out of me taken away without getting that first hold, first kiss, first feed and I had to spend 3 months away from her, I'm angry, I feel ripped off by Mother Nature I'm not snapping out of this anytime soon, it's not something I can I've tried it's not working, nothing is working I just want to go back to my dark bedroom and hide from everyone because everything is getting too much, I can't do it anymore. I was just getting frustrated by everyone's comments, know one understands. I'm not a selfish person but when you get to the point that you are so knocked out with postnatal depression you don't care about anything else in the world, you don't even care about where your own next meal is coming from, you just make it through every day lifeless and have no idea what's going on in your own home let alone in the world around you. 

I begged the doctors to get me help when I was falling apart, I begged them not to put me into a nut house too. I begged them to get me support that would make a difference and lucky enough I was given help and support without being admitted to a mental health facility that both myself and doctor agreed wasn't the option given my situation.  They promised me that is not the kind of help we would recommend, a place like that would make me worse. 

As soon as I let people know and had support from a mental health nurse coming to my house daily while waiting for a bed at the mother baby unit for postnatal depression, my partner took time off work as until rock bottom hit me even he didn't realise how bad I was because I'm good at putting on a fake smile for people I love, I was doing it everyday for my girls.  It all started to fall into place, I knew I had the support from my partner and the best medical help for this area of mental health at my finger tips.

Simply telling the world I'm not okay was the best thing I could have done.  The people I thought would be the most supportive to myself and my partner become the least supportive due to protecting their own emotional being, the people we least expected went out of their way to be their for us and help out and then there were complete strangers with supportive messages and their own personal stories of what they went through that became what kept me going and gave me hope that I'd be okay. My family would be okay.

I took this one just after my stay at the mother baby unit.  I love watching my girls together.  I really am such a lucky Mum.  They both just love each other so much.

Layla now at 6 months old.  She loves Mummy as much as Daddy these days since she has a happy Mummy again.

I got to the point of falling to rock bottom to be able to pick myself up again. I had to spend 2 weeks in the mother baby unit to recover from postnatal depression and bond with my baby. It will take continued treatment for a long time as I was diagnosed with post traumatic stress as well my OCD mode I go into is known as manic anxiety. Although I still have a way to go, I finally feel myself again and the most important thing to me is giving my time to my family who have gone without me for so long.  Even though I was there I wasn't really there. I owe my partner my time and support and that's where we are at right now. I have gained the tittle as the caterpillar who was once shut away in darkness of a cocoon and felt the world was over, to becoming a butterfly out into the world. I am greatful for what I have and yes I am a good Mum, no I'm a great Mum who was affected by postnatal depression and am making it very public because their are so many other great Mums just like you and I feeling just like this who may need a little push to see that things aren't quite right and get themselves some help. It's not the end of the world to have postnatal depression but without help it could become the end of your world.

I have shared my story throughout my stay at mother baby unit along with my recovery and treatment, please feel free to follow my journey on my Facebook page "Just when the Caterpiller thought the world was over. It became a butterfly" by Kyran L. 

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