Some people only dream of angels, we held one in our arms.Anonymous
I had never experienced the death of anyone close to me before so I didn't have much experience with grief. Never in a million years did I think there could be something wrong with my baby or that I would have to say goodbye to her just weeks after giving birth.
After having a healthy child, my second pregnancy went smoothly and uneventfully (besides a few months of morning sickness). I had regular monitoring and all the scans showed that everything was perfect with low risk of anything being wrong. Things like that just didn't happen to anyone I knew... well not back then.
Although Sophie arrived a month early and was a little small weighing in at 1.99kg (4.4lbs), there was nothing to indicate she had any illness. My placenta wasn't functioning the best towards the end which is probably why her growth slowed down. She was perfectly formed, had high Apgar scores and good reflexes. She was doing all the things newborns do and slept a lot. She was in the special care nursery and was being tube fed from birth. She wasn't particularly interested in learning to feed and she would always fall asleep when I held her! I put it down to the fact that she wasn't meant to have been born yet and we didn't know what effect the pregnancy had on her so she probably needed the extra time and rest to finish growing.
Despite this we had every expectation that she would continue to put on weight, wean off the feeding tube and we would soon bring her home like the other babies in the nursery. We had everything ready and waiting for her at home.
On one unassuming day 3 weeks into her life (6 July - a date I will never forget) she did not seem herself and wasn't breathing the best. As she was in the special care unit they were able to monitor her closely. Within hours she went from being my cuddly and curled up little newborn to being floppy, listless and stretched out on a bed with wires attached to her. Every now and then she kept forgetting to breathe. At that time her oxygen saturation levels were still okay and she was being given a bit of oxygen. However during the middle of the night things went downhill and her breathing got worse. At one point she had to be given chest compressions and was transferred to the children's intensive care unit.
On arrival to the ICU I was met with a very different baby. Sophie was swollen and had all sorts of wires and a ventillator attached to her nose. Things suddenly looked very serious. At that point we had no reason to believe it was anything other than a virus or infection and she was given antibiotics. We were met with a team of doctors trying to find out what was wrong. The 'metabolic team' came to see us but at the time I didn't even know what they did so didn't pay them too much attention. I was feeling physically sick with worry.
The next few days were a tense and anxious time while we waited for the results of various tests. So many doctors came to see us and she was put through an array of invasive tests, ending with an MRI scan of her brain. The diagnosis was suspected mitochondrial disease, which is where her cells were not able to produce enough energy for the necessary functions of life such as breathing and feeding, amongst other things. This means that the cells are starved of oxygen and the organs can't work properly - kind of like trying to power up a generator with weak or faulty batteries. Not everyone with the disease has the same symptoms or severity as there are many different subsets of mitochondrial disease and so many variables. Some people can have it and live for months or years and struggle with various symptoms. It is very individual. In Sophie's body the disease affected her breathing, muscles and neurological system.
In her case she was very unlucky - the fact it presented so early before she had even learnt to do basic things like feed was not a good sign. Even when an older baby presents with the disease, they can lose all the milestones they have learnt. Although Sophie's lungs were perfect they were unable to receive the oxygen needed to breathe. She had high lactic acid levels in her body and her chemistry was out of whack. She was always sleepy because she had no energy. Her brain scan showed damage to her brain stem which is consistent with her type of mitochondrial disease (Leigh's disease). I didn't fully understand at the time what the brain stem actually did, but it sustains the very basic functions of life. Without this working well, a person has very little chance of a normal life.
In just one day we went from finding out that the condition affected all of the cells in her body (very bad news in itself), and that there was no treatment or cure (extremely bad news). On top of that the doctors estimated she was likely to only live a few weeks, or months if we were lucky. That news was incomprehensible. I likened it to a story I heard several years before during the Asian Tsunami. A woman caught in the water held onto her baby tightly but the force of the waves ripped her baby from her arms. That is how I felt and there was not a damn thing I could do to stop it happening.
The next 10 days were a living nightmare while we stood by watching, waiting and praying for a miracle. We lived our lives within the confines of the ICU and the walls closing in on us at home, day after day. Sophie got sicker as the days went by and it wasn’t long before her little body could no longer keep up the fight - even while on the ventillator her heart gave in. My poor little girl fought so hard and was poked and prodded for the last 10 days of her life. Even though I knew what was going on and the seriousness of it, I still didn't really expect her to die...
I do however have a lot to be grateful for. I was able to spend some glorious moments with her when she was well and had time to say goodbye and I know that many others don't get the chance to do that. I was lucky that she was in hospital where this was able to be noticed and dealt with quickly. We had fantastic doctors and staff who took good care of Sophie, giving her a dignified and comfortable life. She came a little early so she could meet us, and she died what would have been just one week after her due date. And for the 5 weeks in between we had an angel on loan. As difficult as that is, I wouldn't take back the experience for the world.
In 5 short weeks my life changed forever. I had lived in bliss waiting to bring my newborn daughter to come home, dealt with the stress and turmoil of the ICU and a terminal diagnosis and then I had the invidious task of walking out of the hospital with nothing but a pair of knitted booties she wore. I came home to a house full of baby things which were waiting for her - her bassinet was even beside my bed with clean sheets on it. I then spent what should have been my maternity leave coming to grips with the shock of what had just happened.
I had heard of the saying that coping with grief is like learning a new way to breathe again. It sure felt that way. It was a long and rocky journey, with a rollercoaster of emotions. Just when things started to feel a bit better, they would then get tougher again. I lived through it by taking it a day at a time and an hour at a time.
In the months following her death, I spent a lot of time reading every maternal grief book I could find. I needed to hear other stories of people who had gone through loss as I felt so alone. It gradually helped with the healing process and it gave me in insight into grief. I wasn't up to attending support meetings because I didn't know if I could commit to a time and place at that stage as I lived moment to moment depending on how I felt. I discovered that the loss of a baby through miscarriage, stillbirth and neonatal loss is more common than you would think. A parent whose child has been born with a disability will still feel a different sense of loss because it is the loss of hopes and dreams and how you thought your life would turn out.
Around the same time I also met many other women who had experienced pregnancy and baby loss and I noticed we all shared a common desire - the need to have others acknowledge our loss and to memorialise our baby in some way.
So I used my previous love of creating and designing things and started to make things for my friends who had lost a baby. I included specific wording and facts that I knew were important to them and images that were special to them. They were so touched to receive something personalised in honour of their baby. If could make just a handful of people as happy as I had made these women, then it was worthwhile. It kept my mind busy during the dark days.
Three years down the track and I can say that things are better day to day, though there will always be a piece of my heart missing. The pain is not as intense as it was in the early days but there are moments when you hear a song or see something that reminds you of your baby, where it can all come back as if it were yesterday. I do believe our minds are an amazing thing and are able to cope with whatever life throws as us (even if we need a little help) and we gain a strength we didn't know we had. As bereaved parents we adapt. I have an older child who was a wonderful distraction and gave me a reason to get out of bed in the mornings. One thing I have learnt from all of this is to appreciate what you do have while it is there and don't take anything for granted. It can happen to anyone - grief does not discriminate.