Charlie & Jamie’s Story

When my husband (John) and I discovered that I was expecting twin girls we were absolutely delighted. IVF treatment had been successful and we were lucky enough to be waiting for two little bundles of joy to arrive. I regularly saw my obstetrician and the pregnancy seemed to be moving along perfectly.

One of my best friends was getting married in October 2002 and we decided to make the journey from Redcliffe (Brisbane) to Mildura, Victoria by car. I consulted my obstetrician who said ‘everything looks great’ and he couldn’t see any reason why we shouldn’t make the trip. He advised me to make regular stops along the way and I subsequently made another appointment to see him shortly after we returned.

In late September we set off from Brisbane, and as advised, made lots of stops along the way – which included a short stay in the Hunter Valley. During our stop-over I became the designated driver, but I won’t deny that I did sample some of the wines on offer. While I certainly didn’t over indulge, I still wonder today whether this contributed to what happened the following week.

We arrived in Mildura on Saturday the 5th of October 2002. It had been a long journey and we were thrilled to be staying with the bride and groom. The wedding wasn’t until the following Saturday so we got right into all of the pre-wedding arrangements and tried to help out where we could. On Tuesday we decided to go shopping, top of the list was a wedding present. During that day I started to feel some pain in my lower back that became increasingly stronger as the day wore on. It wasn’t an unbearable pain but more of a steady ache that became stronger. John gave me a few massages which seemed to help a little, and after a lovely Thai curry and a night discussing wedding music, I went to bed.

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Soon after getting into bed I started to experience some cramp like pains. Not knowing what to expect during pregnancy I began counting times and dates, wondering if this was normal. I usually suffer from period pain, including cramps, and I subsequently concluded that if I hadn’t been pregnant my period would have been due around then. So I assumed (stupidly) that normal hormonal changes probably continue to occur during pregnancy. Hence, I tossed and turned all night with cramps and back pain. I got up several times to go to the toilet but hoping to get some sleep I didn’t turn the light on. By 6:00am I was exhausted and seemed to drift off to sleep for an hour or so. By 8:30am I was up at the toilet again and this time I discovered some bleeding. It was then that I started to worry. I told John soon after and he insisted that we go to the nearest hospital immediately. After reassuring the bride that everything was going to be perfectly fine we set off by car to the hospital and I burst into tears.

We arrived at approx 11:00am and quickly saw Dr Ahmed, an Egyptian doctor who I could hardly understand. I can’t be sure that his name was Ahmed as we later made up all sorts of unfavorable names for him. He used a pap-smear instrument to examine me that caused me so much pain that I felt like I was clawing the ceiling. He subsequently advised me that I was ‘3 centimetres dilated’. I remember thinking ‘What does that mean? 3 centimetres doesn’t sound like very much. I’m not due for another 3 and half months. Is this bad? Is this normal? At this point, Dr Ahmed attempted to get a blood sample from me. In less than 20 seconds, he unsuccessfully punctured my forearm four times. When the holes up my arm started bleeding he began placing cotton balls on them which subsequently fell off. Thankfully, a nurse entered the room and stopped him saying ‘we don’t need a blood sample, go and get’ another doctor. As Dr Ahmed left the room I desperately hoped he wouldn’t return. As John inspected my bleeding arm I gave him a pleading expression (that he completely understood) and I don’t recall seeing Dr Ahmed again.

Soon after that, at about 11:30am, a nurse or doctor came into the room and said ‘Would you like to go to Adelaide or Melbourne?’ Like a bombshell we realized that this wasn’t normal and in fact it seemed very bad. John said ‘Can we go to Brisbane?’ Unfortunately, the Royal Flying Doctor Service (RFDS) only flew from Mildura to major hospitals in Adelaide and Melbourne. Within the next minute it was decided that we were going to Adelaide on a flight leaving at 3:30pm.

During the next 3 to 4 hours I was given medication to stop the labor – Ventolin I believe, asthma medication by injection. Over a few tears from both of us John and I agreed that we would get on the flight together and that he better go and pack our things and advise the bride and groom. Shortly after John left I began to have convulsions from the medication, which is apparently a side affect for some people. The bride appeared a short time later and I started to vomit repeatedly. I felt like death but the monitors showed that the medication was working and that the baby’s heart rates were normal. Unfortunately one twin was on top of the other and the nurses had great difficulty picking up the second heart beat. I remember that they had to continually readjust the detector pads between my convulsions and vomiting.

I was very relieved when John returned with our belongings. The convulsions had stopped and funnily just as the ambulance arrived to take us to the airport the nausea disappeared. The RFDS flight was surreal it seemed like it all wasn’t really happening. The takeoff and landing would have to be the smoothest I have ever experienced and during the flight I felt the best that I had all day. Upon arrival I insisted that John take a photograph of the plane – I’m sure he thought I was crazy but ‘no matter what’ I wanted to remember and record what took place.

When we arrived at the Women’s and Children’s Hospital (North Adelaide) at approx 5:00pm, I felt a huge wave of relief. Despite being worried and scared, I thought that we were at least at a place where we would receive the very best of care. Dr Peat, the head of obstetrics, became my doctor and I received more medication – more ventolin and steroids to help the babies lungs develop. For the time being, everything was calm and I was advised to stay in bed.

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Later that evening we discovered that John had to find accommodation for the night. I couldn’t believe that he wasn’t allowed to stay with me in the huge birthing suite I was in. After we said ‘goodnight’ and parted I felt extremely isolated and tossed and turned throughout the night. I was relieved to see John again early the next morning.

At about 10:00am I began experiencing intermittent periods of cramping again. The doctors had detected some kind of infection in my blood but it wasn’t clear whether this was causing pre-term labor. Over the next 7 hours the labor contractions seemed to stop and start, stop and start. Then at around 5:00pm the contraction intervals became much shorter and increasingly painful. By 10:00pm the pain was excruciating. Dr Peat returned to advise us that there was no longer any hope of slowing or stopping the contractions and that an emergency caesarean was required immediately.

An anesthetist came promptly into the room and I instantly told him to ‘knock me out’. He subsequently said ‘let’s talk about an epidural’. It felt like an eternity for him to spill out all of the details regarding this procedure and its risks and side effects. In all honesty I didn’t listen to a word he said. I was in pain that I cannot describe, I thought that my twin girls would be dead and I couldn’t deal with any of it anymore. Eventually I said ‘Have you finished? He said ‘yes’ and I subsequently said ‘knock me out now!’

At the time I hadn’t realized that John couldn’t be present for the birth if I had a general anesthetic. Needless to say, a short time later I was wheeled off for the operation and just outside the theatre area I had to say goodbye to John. This was one of the hardest moments of all and I later discovered that John had sat outside and cried. He also had the unpleasant task of notifying close friends and family of our situation.

Charlie resting in Dad’s handOn 10 October 2002, at 11:32pm and 11:33pm, Charlie and Jaime Delandelles were born into the world at 24 weeks gestation. They weighed 700g and 680g respectively, which are apparently very good weights for 24 week twins – the things you learn!

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Dr Ross Haslam, the Head of Neonatology, became the girl’s doctor and he advised John that the first 72 hours were critical. Shortly after I awoke from surgery I was wheeled into the Neonatal Intensive Care Unit (NICU) to see our daughters. I was still very groggy at the time and had difficulty keeping my eyes open or focusing. They both had red shiny skin that looked transparent in places. Their eyes were fused shut and their arms and legs were incredibly thin. They were so extraordinarily tiny and fragile that I simply cried at the look of them.

Over the next three days I lied around feeling sore and sorry for myself. Subconsciously I thought the girls were going to die and I didn’t want to get too close to them. It was only after a huge melt down that I began the process of bonding. John wheeled me down to the NICU intermittently and I began expressing small quantities of milk. It seemed hopeless in the beginning but I was determined to do something. In a strange way it also gave me something to have control over. It wasn’t long before I was expressing large quantities every 4 hours and building up quite a stock pile.

Being so far away from home we tried to stay in hospital for as long as possible. It was close to the girls and we could be with them as much as we wanted to, during the day or night. A nurse obtained a fold up bed for John so that he could stay in the room with me. While one nurse frowned upon his presence, as if he was invading her very own home, the next one bent over backwards to accommodate us.

Jamie and ring day 1It seemed odd when we started receiving gifts and flowers of congratulations. It hardly seemed something to be celebrating but it was comforting to know that people were thinking of us. We began the slow process of recovery and after 10 days I was released from hospital. Unfortunately there were no vacancies at Ronald McDonald House and we started the arduous task of finding cheap accommodation. After some help from the Hospital Social Worker and a radio announcer, affiliated with the Rotary Club, we were lucky enough to be provided with an old army house on the grounds of the South Australian police academy. My husband and I are both Queensland Police Officers and our extended work family reached out and gave us assistance that we will be eternally grateful for.

The girls progressed slowly. Following birth their weights dropped to 610g and then gradually began to rise. We began the daily ritual of checking weights, oxygen saturation levels, medicinal requirements and monitoring bradycardia’s and how much milk they were receiving. It was amazing to see 1ml of milk being gravity fed into their feeding tube and watching their little tummy’s rise. The nurses and doctors were all amazing and we received excellent care. Nevertheless we had our fair share of ups and downs.

Shortly after birth Jaime suffered a grade 2 brain bleed (IVH) on her left side. This has resulted in the left ventricle (there are two that sit at the top of the brain) being slightly larger than the right – meaning that there may have been some shrinkage of the brain on the left. Ultrasounds have also revealed that both girls have microscopic cysts on the frontal section of these ventricles. Charlie has them on both sides and Jaime on the right only. They are extremely tiny, however they shouldn’t be there and only time will tell if they cause any ongoing problems.

In the first two weeks Jaime’s umbilical-line somehow cut off the circulation to her legs. We arrived to find her legs were black from just under the knee to her toes. It was progressively worse as it went down her legs. The doctor told us that this was a rare and unfortunate condition and that she may end up losing some of her toes. Slowly the natural pinky color returned to her legs and feet and each time we arrived we would rush to examine her. It seemed to take a good week before the color had completely returned. Two of her toes remained a deep black color and then suddenly came good. In the end the pulp or fatty cushion on the tip of one of her big toes scabbed over and fell off. Today you would hardly know that it had happened and one of her big toes is simply flatter on top than the other.

Charlie & ring day 1Both girls received multiple blood transfusions and phototherapy for jaundice and Jaime experienced a mild hernia that later repaired itself. They suffered countless occurrences of Apnoea (breathing pauses), Bradycardia (slowing of the heartbeat) and Cyanosis (breathing stops, the child turns blue and has to be stimulated to start breathing again). There were times when we were completely overwhelmed by what was happening. I remember one day when Jaime turned dark blue right in front of me. I had seen cyanosis before but that day I felt like I couldn’t cope. Without a word I left the NICU, went to a feeding room and just bawled.

We experienced good days and bad days, but most of the time it felt like we were living out a nightmare. It was weeks before the doctors were prepared to tell us that the girls would live. Even then we were also informed that the girls had significant risks of having a disability or permanent development problem. There were risks of cerebral palsy, hearing deficiencies, intellectual disabilities, learning difficulties and visual problems. The risk levels varied for each one but what seemed abundantly clear was that we would be very lucky to have one ‘normal’ child, let alone two.

The most significant medical problem resulted from the girl’s chronic lung disease (BPD) and inability to breath for themselves. Charlie spent 6 weeks being intubated and Jaime spent 5 weeks – where a tube is inserted down the nose, into the wind pipe, and this tube is connected to a ventilator which then rhythmically expands the lungs.

Charlie received 3 courses of steroid medication to assist lung development and Jaime received 2 courses. Charlie spent a further 2 weeks on CPAP and Jaime spent 5 weeks (still ventilator assistance but oxygen pumped into the nose via nasal tubes rather than a tube into the wind pipe). To our amazement Jaime only required supplemental oxygen assistance which ceased in January 2003. Charlie was placed onto intra-nasal oxygen assistance (provided by nasal tube under the nose) until March 2003 and required home oxygen for 4 weeks. Total oxygen assistance for Charlie was 18 weeks and Jaime 12 weeks – pretty good for 24 weekers!

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Cardiac problems developed early and were still present at discharge. Both girls had significant PDA problems (the patent ductus arteriosis, a small duct near the heart that usually automatically seals itself after birth). When the PDA fails to close de-oxygenated blood flows back into the lungs and breathing becomes increasingly difficult. Charlie received 4 courses of indocid medication, which seemed to work. Nevertheless a small murmur or flutter (only 1-2mm in size) was still present at discharge – fortunately it was not pushing spent blood back into the lungs and causing any problems.

Jamie’s little feetJaime received 2 courses of indocid which failed to improve the situation. Over three days we were told that ‘she might need surgery’, to ‘she will need surgery’, to ‘the surgery is happening today’. On 5 November 2002, at four weeks old and weighing only 810g, little Jaime had major surgery to tie her PDA vessel (surgical ligation). Despite being told that this was a regular procedure, for extremely premmie babies, and that the best surgeon in the world was doing it, we were devastated. I think I discovered where all the tissue boxes were throughout the hospital and seemed to be a crying mess on a regular basis. When they wheeled her away we wondered if she would come back at all. Apparently the risks of her actually dying were very low but we wondered how something so tiny could survive major surgery.

It seemed like an agonising hour before Dr Ross (super-surgeon) emerged to tell us that the ‘surgery couldn’t have gone any better’ – we were so relieved. Then we saw our tiny little girl and she looked like she had been cut in half. She had a swollen cut that went from her side to the middle of her back with 9 stitches (today the scar is a very thin white line that looks fantastic). She was doped up to the eyeballs for the next week and just lay there unresponsive to anything – made our hearts ache. But ‘little champion that she is’ she recovered and the surgery worked wonders.

On 16 December 2002 (67 days old) we arrived at hospital to discover that it was time to attempt breastfeeding. I was amazed when both girls successfully received a small feed – I couldn’t believe it all worked. Here they were weighing less than 1750g but their natural instincts had somehow kicked in – after all that expressing. We did have some ups and downs over the first few weeks (including a few tears from me thinking it was never going to work again) but the girls went on to breast feed until they were over 8 months old – by then they needed way more than mummy could provide!

Both girls suffered from retinopathy of prematurity – where the retina doesn’t develop properly. They were so premature that their eyes were still fused shut after birth. It took 11 days before Charlie’s eyes started to open and 21 days for Jaime. Charlie reached stage 2 in both eyes (there are 5 stages with 5th being the most severe causing blindness). She also developed mild plus disease in both eyes, where the blood vessels from the retina are blocked in their development, due to the build up of scar tissue. Jaime reached stage 3 in her right eye and Stage 2 in her left, with plus disease in both eyes. Fortunately, their condition went into regression and follow up appointments, that continue today, have not resulted in the need for any treatment.

In early January 2003 we were informed that the girls were well enough to be transferred from Adelaide to Brisbane. Strangely enough our departure date was exactly 3 months from the day that we’d arrived (9th). The worst part was realising that I would be flying home with the girls but John would have to drive home in our car. We decided that John would drive to Mildura on the evening before and then continue home the following day. I’d been a crying mess for a huge part of our time in Adelaide but saying goodbye to John was terrible. He’d been with me every step of the way and the idea of returning home without him was devastating.

On 9 January 2003 we were transferred from Adelaide to the Royal Women’s Hospital in Brisbane. What a day! I was quite emotional about saying goodbye to Dr Haslam and the nurses from NICU – our miracle workers. The girls were wired up to their oxygen cylinders, which caused a few dramas with airport security, but eventually we were on our way (accompanied with a nurse). Between watching over the girls, monitoring their cylinders and arranging feeds, the flight flew by, but I repeatedly wondered about John and where he was.

On arrival I felt overwhelmed with relief to be home. We were the last to get off the plane but family and ambulance officers were waiting. The QAS were wonderful but unfortunately the girls had to be transported in individual units. They had always been together; we had never had to separate them before (if only John was here we could have gone with one daughter each). It seemed like a very long trip but we all arrived safely and were transferred to our ward.

We were surprised at just how different the two hospitals were. We hadn’t realised how familiar we had become with our daily routine and rituals. Hygiene/sterilisation requirements, visiting times & periods, feeding/expressing areas & equipment, the type and frequency of medical updates and the standards of treatment were all so dramatically different. We couldn’t fault the care that our girls received but we missed the familiarity and warmth of the Hospital in Adelaide.

On the 14th of January we arrived to discover that we were being transferred to our local Hospital in Redcliffe. It was another big change but a good one. It was so close to home that we could have walked (if we hadn’t been so tired). After being away for so long there was so much to get ready before the girls came home. We were still racing back and forth to the hospital for updates and breastfeeds. When I wasn’t breastfeeding I still had to express every 4 hours.

On 20 January 2003, after 102 days, the girls were finally discharged from hospital. Their due date had originally been the 26th and at discharge Jaime weighed 2770g and Charlie was 2490g. Medical staff suggested that we stay with the girls in hospital for a couple of extra days. This is normal practice for parents of very premature babies (especially one’s that are going home on oxygen). But after convincing staff that we could operate the cylinders correctly they agreed to let us take the girls home. It was a day that we will never forget and we took countless photographs – first time outside, first ride in a car, first time in our house, first time in their cots, sleeping on dad’s chest etc etc. We were absolutely elated to finally get them home.

Charlie and Jamie at age 3Since their discharge from hospital we have had countless appointments and assessments. While we have received excellent care and assistance from a variety of health professionals, the quantity and regularity of these evaluations has been draining and distressing. The girls have done amazingly well – against the odds. Today they are 1 months away from their third birthday and no physical or intellectual disabilities have been detected. However, there have been a number of developmental delays.

Charlie had significant physical delays. At 14 months of age she still wasn’t able to sit up on her own. Her physiotherapists have been wonderful and after daily work outs, to build up her muscles, you wouldn’t know today that she had ever been behind.

Both girls have required ongoing speech therapy. In July we finished a seven week course (1 hour session per week) with three other children. The girls seemed to really enjoy it and it ended up being more of a play group than a therapy session. To us they have really improved since then but we were recently advised that they will require further therapy and assessment.

According to their occupational therapist the girls have both been significantly behind with their fine motor and social skills. We have found this area of therapy to be the hardest to accept as it includes playing with dolls and building with blocks etc. A huge part of me thought ‘surely they will get to this when they’re ready’ or ‘they don’t have any dolls’, ‘they don’t have any blocks’, ‘that’s why they’re not passing your little tests’. It was disappointing and disheartening to be repeatedly told that they were so behind. Obviously we felt defensive about their progress and took it as a personal failure – it must be my fault. I always went to these sessions thinking ‘they are going to be so impressed’, ‘the girls are doing so remarkably well’. In reality we heard ‘Oh, they are not doing that’, ‘well they should be doing this by now’, ‘you are going to have to do.. this, this and this.. with them on a daily basis’.

While John and I wondered if the occupational therapy was necessary we couldn’t bring ourselves to ignore it. What if we didn’t do their little tasks? What if it is important and we haven’t done it? The guilt trip was incredible and the personal strain was wearing. John returned to full time work and I was working 3 days a week (now 4). Any additional demands on us seemed daunting, how are we going to fit anything else in?

In July 2003 we had transferred from Redcliffe to Cooroy on the Sunshine Coast. We bought a small house on a 1.3 acre property that needed plenty of TLC on the house and yard. We were lucky enough to have long service leave and recreation leave available to us and stretched it out at as long as possible (half pay). I returned to work in August 2003 and John started back in September. When John went back to work I thought I wouldn’t cope without him. I remember thinking “I can’t do this” over simple things like bathing the girls. Over the first two weeks I probably called John at least 2-3 times a day and cried several times. I’ve never adjusted very well to change but after two weeks I realized that I could do it on my own. I discovered that I just had to make little changes to the way I did things and before long we had settled into a new routine.

To this day, we haven’t placed the girls into any kind of daycare and we share their care between us. When John works an early shift, I work the afternoon and vice versa – whoever isn’t working looks after the girls. We did consider day care but the risks of infection are high and we remain concerned about the girls’ health. Basically, we feel comfortable when the girls are with us and uncomfortable when any one else is looking after them. While our current routine is physically and mentally tiring we recognize that it’s our choice and it only seems like yesterday that they came home – before we know it they will be at school.

I have to admit that I don’t feel like we are ‘normal’ parents. I’m sure that ever parent worries about their child’s health and well being but our concerns go way beyond the norm. In the first two years of their lives we hated anyone touching the girls because of the risks of infection. A significant amount of extremely premature children end up back in hospital (sometimes on numerous occasions) due to illness. We were advised, by doctors, to minimize any risks until the girls reached two years of age. As a result we hardly ever left the safety of our home or had visitors. On the rare occasion when we went out we always had a plastic protector covering the girls and their pram.

Even at family gatherings we found we were unable to relax. There was always somebody present that had a cold or the flu – we were like the infection police and could sniff them out upon arrival. We subsequently spent our time patrolling over the girls to eliminate the risk of disease or contamination. Even when grandparents went to touch the girls I thought ‘have you washed your hands?’ It was infuriating when people did stupid things like cuddle a sick child and then pick up one of our girls. I thought ‘our children are too fragile to cope with illness’, ‘they will end up back in hospital’, ‘don’t you care about their health?’, ‘how can you be so thoughtless?’. Unfortunately we had clashes on a number of occasions and it wasn’t long before we became angry and defensive, and avoided contact. While I am positive that nobody intended to cause the girls harm I am also quite sure that we were considered (by ‘the norm’) to be paranoid and unwelcoming. It is only over the last six months that we have started to feel less stressed about the risks of infection.

I think John and I have experienced fears and feelings that some parents don’t experience in a lifetime. Some people have said thoughtless things to us like ‘you were lucky, when I was in hospital [with my baby] I was woken up every hour or so for feeding’ and ‘you were lucky, your girls were already trained when you got them home’. Other people have said things that attempt to lessen the seriousness of what happened like ‘I know exactly how you feel I had to take my child to the hospital when he was a baby’ or ‘I know, my child was in special care too [for a day]’. Then there’s the multiple birth side of it ‘I know what it’s like to have twins, I had two within 18 months’. Some people tell me that ‘it’s all relative’ but John and I often share a knowing glance at each other with a wry smile. In any case, we hope to ‘never sweat the little things’ and ‘to enjoy every moment because you just never know’.

We couldn’t finish without saying that this has been a life-changing event for us. We will be eternally grateful to Dr Haslam and staff from the NICU for providing our girls with such excellent care. In our work, we often see the worst side of people and can become cynical, but during this period of our lives there were countless people that were extremely kind to us and offered us help and friendship. We like to think that this experience has changed us for the better.

We also started attending a parent support group the week after the girls were born. They were held at the hospital on Tuesday mornings and we found them invaluable. It was only at these meetings that we felt we could be truly candid. We laughed about things that others wouldn’t find amusing and shared an understanding of each others thoughts and feelings. We shared tears and fears amongst people that had previously been strangers and we made friends that we expect to know forever. We have come to learn that other parents of extremely premature babies are the only one’s that really understand what we went through and how difficult it’s been.

We are exceptionally lucky to have our ‘miracle babies’. Lucky they are alive and even luckier that they are so healthy. In many ways we have beaten the odds and we have no intention or desire of forgetting it.

 

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