Infertility, high risk pregnancy, premature birth and a medically complex baby. How Amy kept going.

Infertility, high risk pregnancy, premature birth and a medically complex baby. How Amy kept going.

Do you want to meet a woman that has been thrown more than her fair share of unexpected curveballs during her motherhood experience? Then look no further because Amy Purling from Miracle Mumma is one bad ass lioness and I am so grateful she agreed to share her story with us.

Amy has been through unexplained infertility, miscarriage, complex surgeries to assist her with conceiving, high risk pregnancies, premature births and is now raising a little man with some special features. If you looked her name up in the dictionary, I am pretty sure you would find the definition of amazing. 

How old are your children and what is one thing you adore about each of them?

James is four and Jack has just turned one!
James is full of infectious energy, he lights up our days with his character. Jack is brave and resilient, and the most chilled out happy baby you’ll ever meet!

What is one thing about being a Mum that drives you bonkers?

Feeling isolated even when you have children climbing all over you! Not being able to just have 5 minutes to yourself!

Can you tell us about your experience of trying to conceive your first baby and then the pregnancy complications you endured?

Scott and I tried for 14 months to have a baby before seeking help. We were referred to Repromed and after multiple blood tests, scans and certain specimens in cups, we were told we had ‘unexplained infertility’, meaning everything checked out ok. However I was not ovulating frequently, and this makes it damn hard to have a baby! 

We started ovulation induction using clomid, and on the second cycle we fell pregnant! Sadly, when we went for our dating scan at 8 weeks, we were told the baby had stopped growing at 5 ½ weeks and there was no heart beat. Even years later I can still remember vividly how my heart broke inside my chest at this moment. I had a D&C to remove the embryo and remember feeling so alone…wondering if it was even meant to be. But just 6 weeks later at our follow-up, I found out I was pregnant again, naturally! And this one stuck.

The pregnancy wasn’t without complications. At just 10 weeks I had a large unexplained haemorrhage. At our 20 week scan there were concerns about an amniotic band, lack of movement from baby, and his head was measuring small and long. We were referred to the specialist Women’s & Children’s Hospital for another scan and second opinion, and after an agonisingly anxious week, we found out I had a septum in my uterus which was restricting bubs’ growth and movement – he was basically stuck in half a uterus with limited room. I was warned we might have our baby early but they were happy with how he was tracking. At 30 weeks pregnant, I lost my mucous plug and was sent to hospital as a precaution. Thankfully I was admitted for monitoring as that night my waters broke and I went into premature labour. 

I wrote a blog on James’ birth which explains it all better than I could again here. It was traumatic and scary and I still find it difficult to recall, at times it doesn’t even seem like my life…it was like something out of a movie.

Click here to read. 

James was born at 30 weeks with a rare blood disorder called NAIT.

Not only were you a first time Mum with a premmie, he looked like he had gone 3 rounds in a boxing ring and then you had to find blood products from all around Australia.

Can you walk us through your experience in those first few weeks.

The first day in NICU was a whirlwind, obviously I’d just gone through one of the most traumatic moments of my life, but it had brought me my son – we had waited for this moment for so so long! I was extremely grateful and blessed to have my boy earthside, but I was looking at him through a plastic box and couldn’t even hold him…the mixture of emotions was so difficult to process.

The environment is foreign and scary enough in itself – the machines and tubes and beeping – but then came the diagnosis of NAIT. I remember the most amazing man I’ve ever met, Dr Chad, explaining to us on the very first day that James had severely low platelets and what that meant, and talking us through a rare diagnosis…I felt like my head was spinning. 

We had to consent to transfusions and ultrasounds and just wait. There’s nothing you can do but pray and hope and trust. Thankfully, we were in the very best hands. Slowly, as the days and weeks progressed, it became our normal, and the NICU became our home. Here’s something else I’ve written in the past, again it sums it all up so well! 

“Being a Mum to a premature baby is a rollercoaster ride of ups and downs. Initially, it is overwhelming shock and grief…countless hours spent beside a humidicrib watching your baby fight to survive and leaving the hospital each day with empty arms and an empty heart. It is being faced with the painful possibility that you could lose your baby at any second – something no Mum should ever have to experience. But with each passing minute, you slowly come to realise the undeniable strength and determination of a baby born too soon. 

You start to believe in miracles, and your baby is proof that they exist. You grow a support network of nurses, doctors and other premmie families inside those hospital walls who become your real-life superheroes. Although you are afraid and vulnerable every single day, you are part of something truly special. And as time moves forward, you gain perspective. 

Every single time you look at your happy and healthy baby who defied all the odds, you are reminded to be thankful. You are reminded to be brave. And you are reminded of how much you have overcome. Being a Mum to a premature baby is not something you ever get over, but with the help of the premmie community, it is something you get through. Because at the end of the day, the struggle is part of the story ♡”

How did you feel when making the decision to have another baby after the challenges you faced with James?

Were there times you felt like this was the universe telling you you should give up?

This was a very tough decision, there were so many barriers and so many things to consider. But I always knew we’d never forgive ourselves if we didn’t try for another baby! And yes of course, I wondered if we were doing the right thing; if it just wasn’t meant to be; if I was being selfish. We knew it wasn’t going to be easy, but we just knew it would be worth it. And this time we had the advantage of knowing what we were facing and of being prepared – we had options and treatments and a plan! I strongly believed that James was here for a reason despite the odds being largely stacked against him, and the next baby would be no exception – what was meant to be, would be. Nothing worth having comes easy (well not for us anyway!)

Your road to conceiving Jack was not smooth. You experienced a miscarriage and underwent a number of medical procedures in the hope it would help you to carry a baby to term.
Can you tell us about this?

We did everything we could to make sure we had a fighting chance of giving James a sibling and reducing the chance of another premature delivery. We had pre-pregnancy counselling with a specialist about NAIT and discussed the risks, as well as the ins and outs of treatment during pregnancy. 

We decided to further investigate my infertility and get an opinion on the septum in my uterus. It was believed this was the cause of my infertility and also James’ early arrival – removing this would solve most of our problems! So over the period of a year, I had 2 surgeries to have the septum removed and then we started trying to conceive using ovulation induction once again. We fell pregnant quite quickly on the third cycle, but this once again ended in an agonising miscarriage at 6 weeks.

At this point I was extremely low…I wanted to give up, I felt as though the world was against us and despite always believing everything happens for a reason, I had lost all hope. Our fertility specialist started throwing random explanations at us and trying to ‘fix’ everything with medication, and I just couldn’t put myself through it. I was an anxious mess…trying to conceive had taken over my life. 

We decided as a last ditch effort to get a second opinion, which is where we found the man to whom we owe so much! My incredible new fertility specialist performed a rather major and complicated surgery where he successfully removed my septum (yes, the previous two were actually not successful at all) and also removed endometriosis and performed a D&C – a ‘clean out’ as he worded it. After a couple of months to heal, we conceived our second rainbow baby naturally!

What advice would you give to the Mum who desperately wants another baby but there is a very real chance the pregnancy will be high risk?

I would say I can’t promise that it will be easy, but I can promise that it will be worth it. Because I have the proof. I’ll be the first to admit that high-risk pregnancy is full of fear, worry and anxiety – it was one of the most difficult times of my life (and I’ve had many!)

But “if you don’t sacrifice for what you want, what you want will become the sacrifice.” I could never give up on the life that I wanted because it was going to be a challenge to have another baby. You can do this, one step at a time.

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Can you tell us how NAIT is managed in pregnancy?

Treatment of NAIT is aimed at preventing my body’s immune system from attacking my baby’s platelets, which are recognised as foreign due to a platelet mismatch between my husband and I. However, treatment isn’t a cure – we are not treating the condition itself and there is always a chance it won’t work. 

Every week from 19 weeks pregnant until delivery, I received 5 precious bottles of intragam (immunoglobulin), a blood product made from human plasma. These antibodies flood my blood and ‘trick’ my body to stop creating the specific antibodies which attack baby’s platelets. Each infusion cost almost $8,000, a total of approx $130K for the pregnancy to keep my baby safe and protected in the womb. This process included countless needles, a weekly 5-hour hospital admission and close monitoring of baby to check for any undesired side effects in utero.

I had weekly ultrasounds, and every single one was filled with worry about whether or not we would see a bleed on my baby’s brain – the life-threatening side effect of NAIT. 

Lastly, the condition requires a late pre-term delivery (roughly 36 weeks) via c-section. The longer baby stays in the womb, the higher the risk of platelet depletion and undesired side effects. A c-section is required to reduce any trauma to baby, therefore reducing the risk of internal bleeding.

You spent your pregnancy with Jack wishing for it to be over.

You've written that we need to change our language from “it will be ok” to instead starting to normalise the fear that Mums of high risk pregnancies experience as for some there is a very real chancethat it won’t be ok.

How can we start to do this?

I strongly believe that women experiencing high-risk pregnancies need greater ante-natal support, including education and counselling. I also believe that these women should be offered a midwife/doula with experience in these ‘high-risk’ areas to attend their appointments and offer guidance, emotional support and answer questions. 

I remember sitting and waiting for a scan during my pregnancy with Jack shaking with fear – I was welling up with tears and my palms were sweaty – and when I got bad news, I had no-one there to turn to. It felt so clinical and impersonal, yet it was my entire life! 

Most women feel so isolated and alone at a time that they need support the most – and generally these women are ‘flagged’ as high-risk and receive more frequent ultrasounds, or treatments, or admissions…yet they aren’t offered any extra emotional support! It makes me quite angry that these women are being ‘missed’ in the system.

And of course, I think we need to talk about our experiences – good and bad – so that others can feel less alone. I don’t want to ‘scare’ people with the possibilities, but I only wish I had been more prepared.

A little of course, but I also think there needs to be greater support for NICU parents and those who suffer miscarriages. Even though research has proven that NICU parents are at higher risk of post-natal depression, there are no extra supports in place! We get the routine 6 week checkup as all women do, but after that there’s nothing. Some parents spend the first 6 months in NICU with their baby and the journey doesn’t even end when you leave hospital! And same goes after miscarriage!

James was born at 30 weeks, Jack at 34.
For women who have never experienced a pre-term birth and the harrowing experience of the NICU, what do you want them to know? How can we help?

I mostly want others to know that the journey is different. We simply want others to have compassion and understanding for this. Having a baby prematurely literally changes time, and turns your life upside down. So do all the normal things you do when a friend has a baby, but remember how it is different.

Say congratulations – this family has just welcomed their precious baby – but acknowledge that the road ahead will be hard and that you will be thinking of them.

Continue to check in on them and show genuine interest with how bubs is doing, even weeks and months down the track – don’t be afraid to ask for updates or pictures. Try not to compare or offer unnecessary advice, but acknowledge the bravery and strength of the parents and the incredible work of the doctors and nurses. 

The greatest help for us was practical gestures such as home cooked meals delivered to their door, offers to do washing and clean our home, delivering the essentials such as bread and milk, and giving gifts specific to premmies which we could use to brighten our journey – these things show that you understand.

You’re a fellow tubie Mum, Mr Jack has kept your life interesting since he was born.

Can you tell us about some of the health challenges he has faced?

Oh gosh, where to start! When Jack was born, everyone was holding their breath waiting for his platelet level to come back – and it came back great (lower than ‘normal’, but great!) We all felt like a weight had been lifted! This meant the treatment for NAIT had worked. However after 24 hours his levels were dropping quickly and he required a platelet transfusion. Apart from that, he had no long-lasting effects and his journey through the nursery was smooth and quick. 

I did notice he had a ‘squeak’ while feeding, and the neonatologist clinically diagnosed him with laryngomalacia (a floppy airway) – but he was feeding well and maintaining his oxygen levels, and we were told he would grow out of it. We felt on top of the moon when Jack was discharged after just one week – this seemed like the end of our struggles and the beginning of our lives as a family of four, our puzzle complete.

However, only 7 weeks later, Jack developed a large inguinal hernia and was admitted to hospital for emergency surgery to have it repaired – at the time I remember wondering ‘why me?’ I thought we had faced enough trauma and obstacles and I just wished we didn’t have to face these hurdles. Little did I know at the time that this was just the beginning. Only a couple of weeks later, Jack was admitted to hospital again with a virus and required feeding via a NG tube again to relieve some of the effort. 

Then sadly, just a couple of months later, Jack became extremely sick with RSV and a collapsed lung. He spent a week in hospital on hi-flow oxygen, fed entirely via a nasogatric tube, with 1:1 nursing care. The doctors talked about how he was taking longer to recover than most, but he was premature and still so little, so that was to be expected.

Six weeks later, when Jack was still having difficulty breathing and feeding, I knew in my gut there was something else going on. I decided to get a referral to an ENT specialist and a paediatrician, and from there we underwent multiple tests. Jack was officially diagnosed with laryngomalacia, tracheomalacia and reflux, along with dysphagia (an unsafe swallow), meaning he was aspirating fluid into his lungs when he fed. The solution for this was to thicken his fluids, which sadly meant the end to our breastfeeding journey. This was extremely hard for me – after everything we had been through, breastfeeding was strangely the one thing that had come so naturally to both of us, and we were being forced to stop before either of us was ready. Of course I would do anything to keep Jack safe, but it hurt…a lot. 

Jack refused bottles, and was still ‘choking’ on the small amounts he did take, so it was decided at six months old that he would have a nasogatric tube inserted, and he was fed his thickened milk through the tube. We were allowed to offer small amounts of thickened fluids orally to keep him interested and keep up his motor skills, but we had to be careful – he was still very rattly in the chest. 

A sleep study showed Jack had central apnoea, however thankfully just below the threshold for oxygen. Throughout those first six months of his life, Jack was admitted to hospital at least once a month with chest infections and bronchiolitis. We spent multiple days a week at specialist appointments, tests and procedures. We were slowly able to introduce solids – which he LOVES!

At 9 months old, Jack’s symptoms weren’t improving as they had hoped (children usually ‘grow out of’ a floppy airway), and it was decided they would do a scope of his airway under general anaesthetic to further investigate. They found a rare congenital anomaly of his larger airways called a pig bronchus (he has an extra displaced bronchi that branches off higher from his trachea to solely supply the upper lobe of his right lung). It was another ‘blow’, but it explained a lot of his symptoms, which at this stage had become hard to ignore – he was constantly congested, had a chronic chesty cough and ‘rattle’ when he breathed. 

He was crawling now, and was noticeably short of breath with exertion. He was diagnosed with protracted bacterial bronchitis and was placed on a long-term course of antibiotics to clear up the build up of bacteria and mucous in his airway and lungs. At one year old, Jack had a CT scan of his chest to further explore his airway anomaly, of which we are currently awaiting the results. He is still primarily tube fed his liquids, but loves to eat food orally. At this stage, as we come into Winter, Jack will continue to be fed via the feeding tube to keep him safe, and we have to be extremely cautious with keeping him safe from germs.

I often hear Mum’s who struggled to conceive, have high risk pregnancies, premmies and kids with health issues that they feel a lot of guilt on days where they struggle with motherhood.

They put an unrealistic expectation on themselves that they SHOULD be grateful, they SHOULD love EVERY day.

How can we help to reduce some of this pressure?

Gosh, ain’t that the truth! You took the words out of my mouth (in fact I think I wrote this earlier) – as you can imagine, with everything we’ve been through I feel such a mixture of emotions – I am so overwhelmingly grateful and thankful and blessed. We have two healthy boys full of so much life and happiness, who bring us so much joy each and every day. 

But I also have the underlying fear and anxiety surrounding their health, the struggle of ongoing appointments and tests, the love hate relationships with Jack’s feeding tube! I don’t like to ‘complain’ – I don’t want to seem selfish or needy, or as though I’m not grateful for what we have. But I also try to be honest with others about how HARD it is, because we shouldn’t have to just ‘cope’ with these extra burdens and brush them under the carpet. 

These feelings are valid and real and we DO need to reduce some of the pressure we put on ourselves. I’m not sure how we make this easier, because I honestly still struggle with this myself! As mothers, we also struggle to ask for help. But I do think that talking about it – being raw, vulnerable and honest – is the first step. We need to support each other, lift each other up, and most importantly, stop bringing each other down in any way whatsoever. 

Remove the judgment and the comparisons and just accept each other and our individual struggles. It’s ok to not be ok, to have days when you feel like giving up, to push the ‘unfair button’. 

As a result of your experience with James, you started your own business. Tell us about this?

When James was born, I quickly noticed that the generic baby milestone cards I had purchased weren’t suitable to the NICU journey – we were celebrating the ‘small but mighty’ leaps of a premature baby, such as weaning off oxygen and graduating to special care.

When I had my first cuddle with James, the nurse took a photo, gave me a notebook and told me to write it all down – journaling these precious moments helped me to heal and gave me strength at a tough time. From this moment, I knew I wanted to create a product that both celebrated and documented the unique story of a baby born too soon.

So during my maternity leave with James, I created the original ‘Premature Baby Milestone Cards’, which have provided comfort to NICU parents worldwide. I continued to develop and source new products which are suitable and specific to the unique journey of a premature baby, which now include baby books, journals, beanies, swaddles, pram tags and premmie dolls. When Jack was born last year, I was able to use and appreciate the benefit of these keepsakes for our little miracles.

Throughout our experiences, my passion to support and give back to other NICU families has grown! I donate $2 from every sale to the Miracle Babies Foundation, and continue to ‘pay it forward’ and support charities through fundraising. I continue to write and blog my experiences of raising my premmie boys, and I have created a large online support network and community @miraclemumma on Instagram. Above all, I have made it my mission to raise awareness of premature birth, to give back, and to ensure premmie parents know they are not alone – I’ve got your back!

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All the links

Amy’s Instagram where you are spoilt with pics of her gorgeous boys. Click here

Miracle Mumma’s Instagram. Click here

Miracle Mumma’s website. Click here

Miracle Babies Foundation. Click here

So how EXACTLY does the
Mummy Matcher Service help you?

What You Gain

+ Connection

Talk to other Mum’s in similar situations while you’re at home, sitting in the waiting room for appointments, in hospital or even in the car! 

+ Understanding

Have a conversation with someone who you don’t have to explain the little things to because they already GET IT.  

+ Community

Be part of a community of women who have also faced adversity and like you, are seeking connection. 

What You Reduce

- Loneliness

No longer be alone during your journey on this daunting, unexpected and what can at times be a scary as hell road.

- Isolation

No longer feel like you are the only person in the world who’s motherhood journey isn’t turning out how you thought it would.

- Detachment

Find women you can actually connect with. Women you can nurture and build a real friendship with.  

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