We had been trying for years to have a baby. As my 40th birthday approached, I felt it was becoming more and more hopeless, and I just couldn’t wait for the day to be over. Almost exactly one month to the day after I turned 40, we began our IVF journey and had two embryos implanted – it was the 6th year anniversary of the passing of my beautiful grandmother. I knew that had to be a good omen! 2 weeks later, it was confirmed – I was pregnant. We couldn’t believe it, I don’t think I had ever been so happy and excited in all my life! Unfortunately at 8 weeks I miscarried one of the twins, but the other one continued to thrive. At around 9 weeks I was diagnosed with gestational diabetes and told I would have to give myself insulin injections before every meal for the duration of the pregnancy and maintain a special diet (this was 2 days before Christmas!). Wow - that was a shock! But I knew I would do anything to help our baby make it through to term and, after a bit of adjustment, it just became part of my routine.
I loved being pregnant. I felt fantastic most of the time and relished the feeling of my growing baby inside me. At the 20 week ultrasound we found out we having a girl. We were ecstatic! But then we discovered that the umbilical cord only comprised of one artery and one vein instead of two arteries and one vein (the umbilical cord carries oxygen and nutrients from the placenta to the baby through a single vein and waste products are taken from the baby back to the placenta via two arteries). We were pretty scared but the doctors reassured us that everything else looked normal and that I should have a couple more ultrasounds throughout the pregnancy to keep an eye on her growth. I thought that between having gestational diabetes, where the baby can grow too big, to only having a single artery, which can cause the baby to be underweight, that it should all even itself out! And luckily it did! At just over 39 weeks, on 25 June 2007, our long awaited and beautiful baby girl, Tahlia, was born by cesarean, weighing a healthy 2.9kg. This was exactly 7 years and one day from the day her mummy and daddy met! She had to spend a couple of days in the intensive care unit to monitor her blood sugar levels (which was hard to cope with at the time as all I wanted to do was hold her and have her with me and it was pretty awful to see her with a gastric tube down her nose), but she got over that little hurdle very quickly and was soon back in my arms.
After struggling to breastfeed in hospital due to attachment problems, I was nervous to go home, but luckily once I was home she began latching on properly and feeding became pretty easy. At the 6 week check up with the area health nurse, everything looked fine and then we had a follow up appointment with the pediatrician from the hospital when she was 8 weeks old. Again, everything appeared fine apart from the fact that she sounded a little noisy when she breathed. We were told it was probably a condition called Laryngomalacia (literally, "soft larynx") which is apparently a common condition in infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction and noisy breathing or stridor. We were told that it would probably become louder as she grew over the next few months, but that she should grow out of it by the time she was one. She was growing well so there was no reason for concern.
At 14 weeks, she developed a bad cold and her breathing became very laboured. After taking her to her GP (which is a practice for children only), we were sent to have x-rays taken. There was a bit of blur on the chest x-ray that they weren’t sure about, but the doctor said it all looked OK, but that if she wasn’t any better in the next couple of days to come back (this was on a Saturday). On Monday morning, as I got her ready to attend our second mother’s group meeting, I did not feel comfortable with her breathing and decided she needed to see the doctor again. The doctor immediately knew she wasn’t good and told me to take her straight to Westmead Children’s Hospital, which I did. I had never been so scared in my life. The doctor had rung ahead, so they were expecting me. After being evaluated in the emergency area we were transferred to a ward and told she had bronchilitis. After spending a horrendous week in hospital, we finally went home.
At 19 weeks, she still sounded pretty noisy when she was breathing, so we took her back to the pediatrician who prescribed a short course of treatment on ventalin. This didn’t appear to make any difference and she was fine again until 2 months later (January), when we were visiting my parents in Nelson Bay she became dreadfully ill again and had to be transported to Newcastle hospital by ambulance. Again we were told she had a virus and we spent another 4 days in hospital. In March we had another check up with her pediatrician and he advised that he was concerned that her stridor appeared louder than it should for her age and he referred us to a respiratory specialist where he thought they would probably do a bronchoscopy, which is where they insert a small camera down the trachea to see if there are any obstructions.
In April, we were once again admitted to the Children’s Hospital for another 4 day stay, and again, it was just put down to complications with bronchilitis. On 24 April 2008 Tahlia had the bronchoscopy. We were not prepared for what came next. . . The results of the bronchoscopy indicated that she had a very narrow trachea – 1.9mm (a newborn baby has a trachea of approx 5mm) and that she had a condition known as long segment tracheal stenosis with complete rings. Long segment tracheal stenosis (LSTS) is a rare but life threatening condition which is usually diagnosed either immediately after birth or during the first year of life. Imagine the windpipe is rather like vacuum cleaner tubing, only in a normal trachea, instead of complete rings around the tubing there are C-shaped (or perhaps more probably U-shaped) rings of cartilage (cartilage is the flexible stuff in your ears and nose), with the rings being joined together by other types of tissue and at the back by a strip of muscle. This allows the windpipe to grow and to become bigger when you want to breath in and out quickly. With LSTS, instead of C-shaped rings, the rings in the trachea are complete (O-shaped) and therefore growth is restricted. The airway becomes very narrow and as the child increases its activity either through feeding or through exercise breathing becomes extremely difficult and sometimes impossible requiring urgent treatment. (Imagine running 100 metres and then trying to breath through a straw, and that’s what it must feel like to children with this condition). We couldn’t believe that there was something seriously wrong. Only one in at least 1 million children are born with this condition and only half a dozen operations had been performed in Australia at that time.
The specialist advised that she would need regular checkups, but for the moment she was doing well so we were just going to have to wait and see how she developed. On 30 April 2008 I took Tahlia to see her GP because she had an eczma like rash on her fingers. While the doctor was examining her, she discovered a heart murmour and gave us a referral to a cardiac specialist. As if that didn’t make us feel a whole lot better!! And then, just 2 days after seeing the GP, our world seemed to crumble. Tahlia became really ill again and was in severe respiratory distress. After calling the ambulance we were once again admitted to the Children’s Hospital and this time ended up in Intensive Care. She was initially diagnosed with a virus and was going to be sent home, but over the course of a few hours her condition rapidly deteriorated and we were transferred to the ICU unit. She laboured with her breathing for 3 more days and finally, when she was so exhausted and really couldn’t function anymore, the doctors decided to intubate her to help her breathe and give her a rest. At this time she also underwent a series of cardiac tests and instead of diagnosing a heart murmour, we were informed that her left pulmonary artery was in the wrong position and was positioned between her trachea and larynx and would need to be repositioned as it could cause major obstruction to her already compromised trachea. Scott and I were both in shock, we couldn’t believe what was happening. In the space of a couple of weeks we were on information overload and had no idea whether our beautiful little girl was going to make it through it all.
I was also still breastfeeding her at the time and of course was unable to feed her for a couple of weeks. That in itself was pretty stressful and even though I tried expressing regularly my supply began to dwindle. I felt I was losing control of my world. I had wanted to keep breastfeeding her for as long as possible and I knew that the immunity properties of breast milk could only help her recovery. I didn’t want her to be fed totally on formula if I could help it (she was being fed through a nasogastric tube which goes through the nose and straight in the stomach). It was the only way I knew that I could personally be of help to her and the stress of that being taken away from me was almost too much to bear. Thanks to the help of a few of the fabulous nurses, I was given medication to help my supply and thank goodness after a few days it started working. I was finally able to help my baby in some small way . After a week, the tube was taken out of her throat and she started breathing properly on her own again. Unfortunately due being sedated for a week on morphine, the poor little thing developed withdrawal symptoms and had to be weaned off it gradually. We were transferred to Edgar Stephens ward and after another week, it was thought she had recovered well enough to go home. Unfortunately that ended up being a little premature because within a few hours of being home she went into respiratory distress again and ended up being admitted back to ICU and then the ward for a further week. It was a long month living in the hospital environment. I lived there while Scott would go to work, however he had to travel back and forth from home to look after our dog and cat. In the early weeks on the ICU ward Scott would sit by her for most of the night and I would take over in the early morning through to the evening when he would return again. I really don’t know how he did it! Our wonderful family also came to give me a break to catch up on some sleep, but the majority of the time I stayed by her bed, I just couldn’t leave her.
Finally we got home and she was getting better and started putting on weight again (she’d lost quite a bit while she was in hospital). We then began the rounds of monthly checkups between her respiratory specialist, pediatrician, cardiologist, ENT surgeon and GP as there was a general consensus that she would ultimately require surgery. From that point on we decided that we would keep her pretty much isolated from the general public and especially small children because catching a virus or a cold could potentially be fatal. If she was going to have to have surgery, then we wanted to ensure that she was as strong and healthy as possible. So apart from doctors visits, so began our isolation. Scott of course had to go to work, so he ensured that as soon as he came home he would change clothes and use disinfecting hand sanitizers to try and keep germs to a minimum. I also could only go out occasionally and was very aware of people around me. We would take Tahlia out only to outdoor places where there were few people, ie parks, the beach etc and we would try and stay away from any large groups. Unfortunately though, the bugs still got through and we had another hospital visit at the end of July. Luckily this time she managed to fight the virus and was only in hospital for 3 days. During this time we did as much research as possible on her condition on the internet and what we found wasn’t particularly comforting.