We were surprised, nervous & excited to find out we were pregnant. The Dr sent us for a scan even though she thought we were only about 8 weeks. How exciting! We were going to see our baby for the first time!! It wasn’t long into the scan when I saw two little circles on the screen. “Odd”, I thought to myself, “I didn’t picture it would look like that”.. Then came the words that took us by complete surprise and began the journey of our lives.. “They are both looking well”
After the initial shock wore off, not only that we were pregnant, but that we would have an instant family, we became very excited at the news of twins. This explained why I had been so tired and so sick – never did I imagine morning sickness to be this bad! We found out that they were identical and boys.. Life was good, even though I was feeling terrible; our obstetrician assured us the pregnancy was going well. We had our 19 week scan, in which the report said the babies had short long bones and suggested we have a re-scan in two weeks time. Our obstetrician dismissed these remarks and said it was probably the angle in which the screen was taken so not to worry about getting scanned again. So, on we went, at about 22 weeks I was feeling really bad and had grown amazingly, more than 5cm in one week. We asked if this was normal and were told it was. Still not happy with how I was feeling two weeks later, we went to our local hospital and were again told it’s just how a twin pregnancy feels. Three weeks later with pains, lots of growth and not a lot of movement, I went back to the hospital where they again assured me it was just that I was having twins and was normal….Still not convinced with what I had been told, and still in pain, I convinced myself that we could hang on for two more weeks until our 29 week scan.
The morning of the scan I was so sick I couldn’t even eat, I needed to see that these babies were ok as I wasn’t feeling like they were. We were in there for no longer than 10 minutes when the radiographer told us he had to call our obstetrician. He came back a few minutes later and told us we had twin to twin transfusion and to go straight to the Royal Women’s Hospital Emergency Department where they would be waiting for us. We were still pretty calm at this point, I guess having no concept of what we were dealing with or what this meant helped.
We arrived at the RWH ED to be assessed pretty much straight away. They did a few more scans and spoke about a lot of things we didn’t understand. We picked up on a few words, them being, slow heart rate, fractures, bent bones but had no idea what any of this meant. One lady mentioned to us while we were being wheeled down for a meeting to find out what they had found, that we would be having these babies sooner rather than later. I was still pretty relaxed at this stage, as while I knew things weren’t good, it was pretty common for twins to arrive early so I figured I was in for a bit of a hospital stay and perhaps and early delivery in a few weeks time. When we got into the meeting, I asked, “So sooner rather than later, how soon are we talking?” “Within the next hour or so” was the ladies response as another nurse jabbed my leg with steroids “Did you want to call any family?” My partner and I looked at each other in complete shock…. What was happening to our babies???
I had an emergency caesarian pretty much straight away, they sent a Dr in to tell us that they had severe stage 4 twin to twin transfusion – stage 5 was death in-utero, so they weren’t in good shape. They noticed one of the heart beats was very slow and that he would be lucky to make it, the other twin wasn’t too good either and we needed to get these babies out now. Then they sent in another Dr to tell us what the chances were for babies born at 29 weeks, looking back, we still had no idea, no understanding at all of what this all meant… We had never been so scared in all our lives. My partner took a photo of me at the RWH not long before the ceasar and what should be a joyous photo full of hope and expectancy shows only fear and bewilderment about what is about to happen.
Our boys were born, Twin 1 (1.5kg), the bigger, stronger of the two and Twin 2 (730gm), the smallest and sickest. My partner took me up to see the boys first thing the next morning and while I did see them briefly as they were wheeled past me in the theater, I was definitely not prepared for what I was to see. Here were these two tiny babies, Twin 2, resembling a skinned rabbit, he was puffy and bruised looking and had tubes and monitors everywhere, Twin 1 at least resembled a baby but was still tiny, he looked like a small version of a very old man. They were both very unwell. The twin to twin transfusion had taken quite a toll. I felt like a complete failure as a mum. What had I done to them? How did they not grow properly? What was going to happen to them? After a few days we asked about the fractures and bent bones and were told, after some investigations that it was likely they had Osteogenesis Inperfecta. We felt even worse, what did this mean for them now and long term what sort of quality of life would they have? How would we be able to manage? Could we care well enough for them? It all started to sink in a little and after a few weeks the language of NICU became something we could understand and we realized we had started what was to become our lives for the next 8 months.
As it turned out it thankfully wasn’t OI but we didn’t know what has caused their bent, soft and broken bones and small bell shaped chest walls. We do know that on top of the standard 29 week prematurity issues the small bells shaped chest walls caused restricted lung growth and made things even harder for them. It is hard to put into words how sick these boys were. It was a situation of one step forward and two back and to see my children or any child go through so much at such a young age has aged my heart with the constant pain I felt for them. Twin 2 remained so small and sick for what felt and still feels like an eternity, but we thought Twin 1 was going well. This was not to be the case, after a little more than 2.5 months he went into respiratory distress and never recovered. Ironically his larger size was to not play in his favour and after a few days of his breathing getting harder and harder for him and his heart became less able to pump due to his small lungs and his size. The doctors ventilated him while they tried whatever they could to turn him around but after one long week his little body gave up and he left us to become an angel, my heart is broken. This was the most devastating time of our lives. After so much and fighting for so long it seemed impossible that this had happened. However we still had twin 2 needing our love and support. I don’t know how, but we had to find it in us to stay strong for Twin 2. It took Twin 2 another 4 months at the RWH and a further month at the RCH before he was big enough and strong enough to eventually come home, oxygen and feeding tube included. He was at long last home with us… had spent 8 months and 15 days, every day, at the Royal Women’s Hospital or the Royal Children’s Hospital.
Being in such a high pressure, intense environment for such a long period of time, you tend to become institutionalized and somewhat scared of what should be normal. Living with the reality that we had lost one of our beautiful babies and had been on constant up’s & downs of life and death situations with the one who was still hanging in there for so long left us in a place we never imagined existed before now. Don’t people have babies all the time? Isn’t it something that just happens and people celebrate? We had learnt quickly this was definitely not the case. It was through LLT’s newsletters & morning teas at the RWH that I first heard of them and eventually got up enough courage to attend one. Although introducing myself and giving a brief rundown of our situation meant I had to admit to myself this was really happening, it was one of the best things I had ever done. It was there that I met people who had been through the journey, as different as they all are, and had made it out the other side. These were people that truly understood what the NICU and all that comes with it was like. The Dr’s and especially the nurses, are fantastic, providing medical and emotional support to the babies as well as their parents 24 hours a day, however when your day finally comes and you get to take your baby home, you can’t take them or the machines that you have relied on for months & months on end to assure you that your baby is ok and that you, as parents, can do this.
This is where for me LLT really helped us out. I called them and within a few days Karin was at my house for a visit. She was so fantastic. We discussed what services were out there in the community that might be use to us as a family, be it respite, grief counseling, early intervention services for our baby etc. She put me in touch with a lady, Shusannah who had also had a child at home on oxygen who was able to relate to how I was feeling and suggest some very useful services and points of contact for our family. Karin continued to ring to check to see how we were going on a regular basis and was able to provide some positive and reassuring support, that not even our family & friends could, she still does this today. We have just been through a second pregnancy where things weren’t always looking good. Once again, Karin and LLT were right there to support us along the way. Thankfully everything has turned out just beautifully and we have a healthy, term, precious baby girl. I can’t tell you how eternally grateful I am to have had someone like LLT, Karin in particular, to help us through the transition from hospital to home and beyond. I have formed very special friendships along the way and they (after a few rocky runs back and forward to hospitals), helped turn what was a initially a daunting, frightening time & experience into what it should be….A special time to remember, the moment of finally bringing your baby home.
Our little boy is now almost 2.5 years old. He came off his oxygen just after his 2nd birthday and we were finally able to take his feeding tube out a few days before Christmas!!! I can’t even begin to tell you what a relief it is to see him finally being able to breath and eat without any help at all…..