The Klasen Family Journey

Our journey into the Neonatal Intensive Care Unit (NICU) at Newcastle’s John Hunter hospital started long before the birth of our twin girls...This is our story.

After having no luck trying to fall pregnant naturally, Emma was diagnosed with a condition called Polycystic Ovarian Syndrome (PCOS). Relatively common, this condition meant that our chances of falling pregnant naturally were slim, and we were quickly referred to Hunter IVF clinic for further treatment. After several failed months of fertility drugs and disappointment we decided to proceed with a full IVF cycle – starting in May 2004.

Despite the information being full of statistics to the contrary, we were very lucky to conceive on our first round of treatment – not only were we both shocked, but overjoyed at the prospects of becoming parents for the first time. As with any expectant couple during the first few weeks of the pregnancy we were filled with mixed emotions – excitement , disbelief (that we managed to fall pregnant on our first IVF cycle) and also with concern for the health and wellbeing of our precious little baby. All the while we were wondering whether our little embryo was in fact just one – you see, Emma is an identical twin.

At seven weeks into the pregnancy, we were blessed to have our first look at our little baby – with Emma having her first ultrasound. We were pleasantly relieved when we were shown the tiny blurry black dot on the ultrasound screen, followed by the audible “bump, bump, bump” of our little baby’s heart.

Emma’s pregnancy continued well, and at twelve weeks gestation we attended The Maitland Hospital for a regular ultrasound and NT scan. We were absolutely shocked when the sonographer said “There’s twin one, and there’s twin two”. The look of shock on our faces must have said it all – you see, the sonographer thought that we already knew that Emma was carrying twins because we’d previously had a scan at seven weeks. It was absolutely incredible news – not only were we going to be first time parents – but we were going to be having twins as well!

Unfortunately our surprise and excitement was marred when the sonographer could only find a single yolk sac. After a lengthy consultation with the radiologist, we were referred to the John Hunter Hospital. It wasn’t long after our consultation with the doctor that he diagnosed a condition known as Mono Amnionic Mono Choroinic (MAMC) twins. This was a very serious condition by which both twins shared a single placenta in the womb. At this time we were warned of the seriousness of the condition – specifically the risk of cord entanglement (possibly resulting in stillbirth), and another potential condition known as Twin to Twin Transfusion Syndrome (TTTS).

This was an extremely difficult time for the both of us. On the one hand we were still overjoyed at the prospect of becoming parents yet on the other we were confused, scared and upset that we’d been through so much to get our little baby, and the very prospect of becoming parents looked like it was going to be taken away.

As a result of our new situation, the doctor asked to see us every two weeks thereafter – primarily so that he could monitor the development and growth of the babies, check for any indication of cord entanglement and to check for signs of TTTS. Throughout this time Emma continued to carry the twins well, experiencing all the “normal” facets of being pregnant such as tiredness, small bouts of nausea, and a constant need to visit the ladies room!! All the ultrasound scans were predicting a due date of late March 2005, however we had been informed numerous times that twins commonly arrive before their due date.

In early November 2004 we presented to the John Hunter Hospital for another of our scheduled fortnightly scans. Although we didn’t think anything of it at the time, Emma’s belly had really ballooned out during the previous week. She was 22 weeks gestation at this time. We look back and comment on how we put it down to twins taking up so much space. Unfortunately our little girls had taken a turn for the worse inside the womb. The doctor detected a difference in size between the two babies, combined with an abnormally large amount of amniotic fluid surrounding the girls.

As expected, the news wasn’t good. Our little babies had developed signs of the TTTS condition that we’d been warned about. Whilst we were waiting, the doctor had been on the phone to a colleague, and he’d arranged an appointment for us the following day at Royal Hospital for Women, Randwick.

Overnight we became even more worried about our little girls. The 2 hour drive to Sydney seemed like an eternity, although we were accompanied for the trip by my sister and her Husband. The specialist performed another lengthy ultrasound scan, and confirmed our Doctor’s diagnosis of TTTS. Although the diagnosis had been reached, there were several treatment options – all of which put both Emma and the babies at significant risk. Late in the afternoon we were sent out to Liverpool Hospital to seek the opinion of another specialist, specialising in the treatment of TTTS.

Again, the diagnosis was confirmed – however both doctors were still unsure of the best course of action with which to proceed. Essentially it came down to four options. It was late on a Friday afternoon, and the specialist suggested we ought to go home, have a think about how we wanted to proceed. We couldn’t bare to think of what it would mean to lose one of the little babies. The weekend was spent trawling the internet – reading the stories from the many TTTS groups that existed around the world, and mostly walking away disappointed, confused and scared. The chances of losing both babies at this stage was extremely high, and with only being at 22 weeks gestation there was virtually no chance of them surviving outside the womb.

By Sunday we had decided that the laser procedure was going to be the best chance to save our little girls. Before we knew it we were booked into the hospital for the procedure on the following Tuesday afternoon. The doctor came and visited me at the end of the procedure. He explained that the procedure had gone extremely well, and that although one of the babies heart rate was slightly low at the end of the operation, it was still too early to tell.

After a long night with not a lot of sleep between the two of us, we had another ultrasound scan the following morning. Although we weren’t trained sonographers, we’d spent enough time looking at ultrasound screens by this stage to know that the doctor could only find one heartbeat. Our fears were confirmed – one of the babies hadn’t made it through the night.

This was another big blow to the both of us. We wondered what we had done wrong – to have everything continually stacked against us all the way through. Fortunately we are very lucky to have a close, supportive and caring group of family and friends.

We returned to Newcastle soon after receiving the news, and were booked in to have a follow up scan a fortnight later. Our next scan was at 24 weeks gestation, and this showed that the remaining baby was growing well, and there was no abnormal increase in amniotic fluid. The deceased baby was still visible on the scan, but was clearly smaller than the other twin.

We would continue to carry both babies for as long as possible and an elective caesarean would be performed at 32 weeks gestation. It was around this time that we were given our first introduction to NICU.

Emma continued on with the pregnancy, the booking for a caesarean section was made – Tuesday 25^th January 2005. The week before the birth, Emma was given two injections of steroids to help with the development of the baby’s lungs.

At 2:09pm on Tuesday 25^th, the doctor delivered the first of our twins – Rachael (the surviving twin) was delivered first, weighing 1756gm. Almost as soon as she was out, Rachael gave her first cry – after everything we’d been through it was so reassuring to hear something to tell us that she was ok! Our other little girl, Sarah was born at 2:10pm, weighing 210gm.

The operating theatre itself was extremely busy. Aside from the staff performing the caesarean and delivery, another whole crew of staff were there watching over Rachael’s first few minutes of life. Rachael was doing extremely well – her APGAR scores were 9 and 10 respectively, and she did not require any breathing assistance nor oxygen. Whilst Emma’s caesarean procedure was finished and she was taken into the recovery ward, I stayed with Rachael as she was wheeled across into the NICU ward.

After some more tests and the placement of some cardiogram probes on her chest, Rachael was put into a humidicrib to try and boost her body temperature.

Once Rachael was settled, I made the obligatory “I’m a Dad!” phone call to various family and friends, before catching up with Emma in the recovery ward. Shortly after, despite still being very nauseous Emma was wheeled on her hospital bed around to the NICU ward so that she could see Rachael again. Again, our feelings of excitement and pride on the birth of Rachael were being offset by our thoughts of Sarah.

Rachael’s journey in NICU was going exceptionally well. Emma and I both had our first cuddles the following day, and by all accounts Rachael was doing everything they would have expected a baby of 32 weeks gestation to be doing. Being first time parents we worried about every little red mark, every little imperfection on her tiny body.

Prior to the birth of our girls, we had already arranged for a small funeral service to be held for Sarah. Emma had already been discharged from hospital, although we were spending every minute of our day with Rachael in NICU. Despite having the best medical staff in attendance, walking away from Rachael and NICU for the day was tough going. On reflection though, it allowed us the opportunity to say a proper goodbye to Sarah, and to remember her unexpected but short journey with us.

On February 2^nd 2005, Rachael was maintaining her own body temperature, which meant that she could “graduate” from her humidicrib into the usual plastic cribs used in most maternity wards. Anyone who has spent time in the NICU unit will understand how proud you feel – getting your baby out of a plastic box and into the “real world” is a momentous leap – one that generally means being closer to coming home!

Rachael was allowed to leave NICU and spend a night with Emma back in the John Hunter Hospital’s maternity ward. It was another of those times where your NICU journey makes you feel so proud, but also so lucky. We’d made several friends with other parents – some whose babies had been in NICU well before Rachael, and while you were glad to be leaving NICU, you still felt for those who were left behind.

The following day (14^th February 2005) we brought Rachael home. By now she weighed 1830gm, and was fully breastfeeding. I clearly remember trying to strap this delicate little baby into what seemed to be a massively oversized baby capsule.

Once home, our first week was like a dream. We put Rachael’s cradle into our room so we could get used to having her around, and also because we were scared we wouldn’t hear her! After everything we had been through, being woken in the middle of the night by her cries didn’t worry us in the slightest.

Even though our stay in NICU was relatively short (compared to some of the other parents we met there) we couldn’t wait to take our little girl out and show her the sights of the world. It felt strange pushing her around in the pram – especially since she was still so small that she barely made up half the length of the pram when it was laid back. We certainly attracted a lot of attention from people when we were walking around shops – it seemed like everyone wanted to stop us and have a look – some people even touched our little Rachael. Anyone who has visited the NICU will understand the rigours of having to wash and disinfect your hands regularly. Having complete strangers wanting to touch our precious little bundle certainly put us on edge!

Rachael had settled in at home quite well, and we were glad to finally get some stability back in our lives. Unfortunately that was to be short lived. It was the evening of Saturday 19^th February when Rachael took an unexpected turn for the worse. She started to vomit regularly, and would not tolerate any breast milk. She barely slept during that night – as first time parents we kept telling ourselves that it was ok and that one bad night was explainable for a newborn.

On the Sunday Rachael spent most of the day sleeping. Emma tried on several occasions to breastfeed her, but she just wouldn’t take anything. We started getting more concerned – after Rachael’s many vomiting episodes on Saturday night followed by no food all day on Sunday we were worried that something was wrong. We called the nursing staff at NICU and they suggested we should try feeding Rachael a bottle with some expressed breast milk. Again, we couldn’t get her to drink.

By Monday morning we were really starting to panic, so we called NICU again and were told to come straight down. We were very fortunate that the paediatric staff allowed us to go straight back to the NICU ward – by rights we should have gone to the emergency department and would have been forced to wait.

The paediatricians immediately put Rachael onto one of the open heater beds, and discovered that she had lost 50 grams in the week she had been home. By this time her body temperature had dropped to an unacceptable level, so they put her back into a humidicrib again to try and warm her up while they completed further tests.

Yet again we felt that we’d been dealt a massive blow. Rachael’s crying had turned to screams and it was clearly obvious that she was in pain. Nothing we could do was helping her to settle, and we felt so helpless for her. At one point the NICU staff were attempting to take a blood sample from Rachael and we had to leave the room because we couldn’t bear to see her struggling.

Rachael spent the day in NICU and after having several tests completed we were still no further ahead in understanding what was wrong. She still wasn’t taking any food, and by this time NICU had inserted a small tube into her stomach, which was draining an awful coloured fluid. Again we had to leave her late that night to head home and try to get some sleep ourselves. On Tuesday morning we were advised that they had called for a paediatric surgeon to assess Rachael’s condition. During the day Rachael was moved from Level 2 into Level 3 NICU – her condition seemed the same to us, but looking back now we can see how she had deteriorated and was needing a higher level of nursing care.

The surgeon referred Rachael for a radioactive dye contrast X ray – this essentially involved a dye being injected into her stomach and a series of X ray images to see if there was a blockage. Unfortunately we were not able to hold or touch our little girl through all this – we had to stand back behind a safety screen and leave the nursing staff and radiographers to do their job. I would have to say that personally, this was probably the hardest part of our entire NICU experience – seeing our little girl screaming in pain and being totally useless to try and help her.

The X ray confirmed that Rachael had a small obstruction in her bowel. The surgeon met with us late on Tuesday afternoon and told us that he would have to operate on Rachael and remove a small piece of her bowel. The thought of our tiny little girl lying on an operating table was another reminder of how serious the situation was. I clearly recall asking the doctor how risky it was to operate on such a small baby – especially her having to undergo a general anaesthetic. He gave a great analogy – comparing the risks involved in driving to Brisbane, versus the risks of driving to Brisbane on a long, wet weekend. He said if you were determined to get to Brisbane then you’d take the extra risks. Besides, we didn’t really have any alternative options – all we wanted to know was how soon it would happen.

Rachael was taken into theatre on Wednesday afternoon. Whilst my most challenging time was the day before, Emma found the part of saying “goodbye” to our little baby at the doors of the theatre the worst experience. We were told the operation would take around two hours. We spent the bulk of that two hours sitting in the theatre waiting room – constantly hoping for some news. Now I understand what they mean about an expectant father pacing up and down the corridors!

The doctor called in at the end of the operation and advised us that everything had gone extremely well. He said they had taken out approximately 3cm of bowel, and that there was a large amount of waste and unpleasant material inside the obstruction, but that she was expected to make a good recovery.

The nursing staff arrived a short while after, and we were able to see our little girl again. She was extremely pale and was attached to all sorts of leads and tubes – but was peacefully sleeping off the anaesthetic. We followed her back around into Level 3 NICU, where she stayed for five days. She was still attached to all the monitors and tubes but we were able to give her cuddles again – and she even started breast feeding again which was a great feeling.

Rachael “graduated” again back into Level 2 NICU, and from there she started gaining weight again very slowly. By 3^rd March we were again allowed to take our little girl home. After everything that we had been through, it was a great relief to know that she was going to be ok. It finally made sense why her tummy was so big at birth – call it parent’s intuition I guess!

Fortunately that’s where our NICU journey ended. Like most premmie babies, Rachael was required to return to the paediatric clinic for regular checkups – every two months until she was one year old. By age one Rachael was about 10 kg and was about 70cm in length – approximately normal for a baby of her corrected age.

We were very lucky that Rachael didn’t have any side effects as a result of her initial struggle for life. Although she didn’t walk until she was about 17 months old, Rachael skipped the crawling phase but rather preferred to shuffle herself around on her bottom. Rachael now has a baby brother (Alex Luke) to keep her entertained – Alex was the complete opposite to Rachael as was born one week overdue weighing a massive 4.93kg – we certainly never do things by half measures!!

In loving memory of Sarah Jane.