Helping to improve long-term outcomes for very premature babies.

Featured Story - Abbie's Story 

Everything was progressing normally, or so I had been told, even though I had been bleeding for what felt like the duration of the pregnancy. I’d had several early scans just to monitor the bleeding, but no cause was ever determined. At 20 weeks (mid September 2002) we were booked to have our routine ultrasound and we were so excited. “I’ll bring you guys in the videotape tomorrow and we can take bets on the baby’s gender at morning tea” I told my work mates as I flew out the door on the way to the appointment.

My husband and I sat there nervously as the person doing the ultrasound told us that everything was looking peachy and the baby’s heartbeat was strong and regular. He thought my cervix looked a little short though, and decided to do an internal ultrasound just to be on the safe side.

As soon as the image came on the screen, we knew something was wrong. Surely our baby’s leg isn’t meant to be poking down that far? After what seemed like ages, the technician left the room to ring our OB. I was able to get dressed and we sat together both clutching my little pot belly willing the baby to be okay. When he returned to the room, he told us to go immediately to the hospital where I would be admitted. My cervix was shortened and already dilated about 1.5cms and my membranes were bulging through the opening and at risk of rupturing – effectively I was in the early stages of labour and at 20 weeks, there was little hope that our baby would survive.

I was admitted and placed in a bed with my head lowered and my feet raised so that gravity would help force the membranes back through my cervix. My OB immediately started me on IV antibiotics in case the premature labour was being caused by an infection to the cervix. After much deliberation, we decided to stitch the cervix closed with a suture (cerclage) – even though the current risk of infection might mean that my body would reject the stitch and I could become ill. The longer we put off the suture, the more my cervix would dilate and we would miss our opportunity to save the baby. Our OB said that it was likely that I had a condition known as incompetent cervix (or dud incubator, as I liked to joke) which was usually caused by previous late term abortions, trauma through surgery to the cervix or even through genetic reasons. I felt that none of these really applied to me, but we were grateful that it had been diagnosed at this early stage as it is not often discovered until a woman has had a number of late term miscarriages as the baby becomes too heavy, pushes on the cervix and causes the cervix to open. I was also told that I will now need a cerclage at around 13 weeks for any future pregnancies.

The surgery went well and after a few days in hospital I was sent home on strict couch rest, although after less than a week I started bleeding again and was again admitted to hospital where I then remained on strict bed rest. I was not able to use the toilet or bathroom and even now I shudder at the sight of a bedpan! I could feel my muscles wasting away although I was frightened to even do the few exercises that the hospital physiotherapist had shown me in case that caused further contractions. The kitchen staff took pity on me and fed me fried bacon sandwiches, cakes and huge thickshakes in an attempt to fatten me and the baby up.

I had several false starts around 25/26 weeks and would panic everytime I was taken upstairs to the labour ward. I’d be given a steroid shot in the butt (yeouch!), a handful of tablets to take to stop the contractions (which would make me even more nauseous and woozy) and then I’d calm down and be wheeled back to my ward. I was having weekly ultrasounds, sometimes more and was more often than not hooked up to a fetal monitor. I soon began to go day by day instead of week by week and around 26 and a half weeks I knew things were not looking as good as I’d have hoped when I looked to have developed another infection. The baby was in breech position and monitoring revealed that there were times that the baby’s heartbeat dropped to less than 60 bpm when I was having episodes of excrutiating back pain – later found to be contractions as my cervix tried to contract against the stitch. I had also noticed over the last few days that I’d been feeling sticky between my legs which the nurses tried to reassure me was nothing to be concerned about, but I was certain it was more than that. A scan the evening of Friday 8 November 2002 showed that the baby was in distress with little fluid and possibly suffering from an infection, and I was scheduled for an emergency caesar that night.

It all happened very quickly after that. I was prepped – even though I was pleading with them to let me lay there and let the baby grow for just one more week until we reached my goal of 28 weeks gestation. I was told that it’s better to deliver a healthy baby at 27 weeks than a sick baby at 28 – so the operation went ahead. The anaethetist had some difficulties when he asked me to sit up and curl into a ball so that he could insert the spinal tap given that I had been laying horizontal for the past 7 weeks and was very weak, so we improvised and he gave me the injection with me lying down on my side curled up. The room was full of so many people – a whole team of specialists just for our baby and I was amazed at how ‘routine’ this all seemed to them. I was a quivering mess of nerves and excitement and worry and happiness and fear – all at once! Our baby was born and her little mewing cries were like music to our ears – even if we got quite a surprise having been convinced we were having a boy! She was wrapped up and bought over to me for a quick kiss on her forehead before she was whisked away with her dad in tow on the way to the NICU.

Abbie May was born at 7.27pm on Friday 8 November 2002 weighing 2 pounds, 9 and a half ounces or 1.12 kilograms. Her length was never measured. Our efforts in hospital had paid off – people commented how tiny she was but to us she was huge! Usual weight for a 27 weeker is around 800-900 grams, so we were very grateful to the kitchen staff for stuffing us both silly! I don’t remember much of Abbie’s few weeks in the NICU – it was all a blur. I was beside myself when I was discharged from the hospital and had to go home without her though – but even though I was still recovering from my caesar I caught a train and a tram to the hospital every single day before my husband would come to visit in the evenings and take me home. He owns his own business so to take time off was nearly impossible but we’re both pleased to say that we never, ever missed a day visiting her in hospital and we rang every single night before bedtime to say goodnight and get an update. I was so anxious to never leave her side that I wouldn’t even go to the cafeteria for lunch and would instead gobble down a muesli bar whilst I was expressing.

We quickly learnt that it was a case of 2 steps forward, one step back, as Abbie fought off infections, had braddies (heart beats slowly) and apnoeas (forgets to breathe) but she slowly made her way closer and closer to the Special Care Nursery. From the moment she was born, she was very active – she would wriggle so much that the nurses would have to wrap a nappy between her legs to stop her from pulling out her CPAP and IV tubes. After several weeks, she was moved up to the Frances Perry House SCN and she remained there for about 9 weeks until she was discharged on 21 January 2003 – well before her original due date of 7 February 2003. She came home with an apnoea monitor and had been taken off of CPAP for a few weeks beforehand. After 11 weeks at the hospital, it felt so good to have her home with us – although it was scary at times. We worked out that she slept best when surrounded by noise, so we’d go to sleep with her in our room and the TV on low and given her less developed immunity, we stayed away from crowds and people with colds as much as we could for the first couple of months. We settled into a routine pretty quickly and Abbie was a dream baby – she slept well and often and had no problems feeding. Life really changed for the better when Abbie came and we are forever indebted to the wonderful doctors, nurses and staff of both the Royal Women’s Hospital and Frances Perry House for without their fantastic efforts we are certain that Abbie would not be the special part of our lives that she is.

Abbie is now a happy healthy little girl who will be two in November this year (2004). We have finally made it through what turned out to be a harrowing winter for us, as Abbie developed Bronchiolitis in July and was hospitalized for a week and back on .25% oxygen. Seeing our little girl with nasal prongs again bought back many frightening memories, and she became so weak and thin after not eating properly for quite some time that she lost about one kilo in the space of less than a week – pretty scary when she didn’t weigh much over 9 kilos to start with! We took her home, only for her to go back down hill again and develop pneumonia in August, so it was back to hospital again for about 3 days. During this time she was also finally diagnosed with Asthma and referred to a respiratory paediatrician and after taking some pretty serious asthma medications to try to get her breathing under control, we hardly ever use her ventolin any more and we only need to take a preventative steroid once in the morning and again before bed. She has six puffs of the steroid (Seretide) through a plastic spacer, and although she would fight tooth and nail the first few times she used the chamber, we treat it like a game and now she even holds her face up for us to put the mask on for her. She’s probably also the youngest person I know of who can already count to six!

As part of one of the hospital’s follow up program for one of the research studies that Abbie’s been involved in since birth, she spent several hours with a speech therapist/psychologist and had a thorough paediatric checkup. Thankfully there were no major issues identified, and in fact, her level of speech was assessed as being more in line with a child of her actual age and not her corrected age – Abbie loves books and reading and the therapist was certain that this was why her vocabulary and comprehension was so advanced. The paediatrician commented that Abbie had very low muscle tone and was hyper-flexible and explained that this was why she was not only late walking (around 20/21 months actual age), but why she was such an ‘ungainly and not very graceful’ walker. He advised us that Abbie will probably never excel at sports where she needed incredible speed and agility, like sprinting, but said that we should enroll her in ballet or gymnastics classes instead. Her father was also pleased to hear that she might be a good golfer too……

Mind you, with everything that we’ve been through over the years (and I’m sure there’s still more to come!) – we wouldn’t change a single thing and couldn’t even begin to imagine how different and empty our lives would be without this very special little girl around.

A wise couple (okay, my parents), once told me – “don’t miss a minute – it goes by so fast”. Don’t you hate it when they’re right……..