Made us stronger.

Kiara Rose Risku

Our “new” life began when I was 29 weeks pregnant with my second child. I had grown so huge over the past 2 weeks and my doctor suggested that I have a check up ultrasound because she suspected I may be carrying twins. The ultrasound certainly didn’t show twins, it showed that the tiny baby inside me had a blocked stomach and bowel (duodenal atresia). The young girl who was doing the ultrasound was also pregnant and she had tears in her eyes as she told us what this may mean for us. There was a 1 in 3 chance that our baby had Down Syndrome or some other chromosome abnormality. Our baby would certainly be born premature and would require emergency bowel surgery in order for it to survive. An obstetrician organised for an amniocentesis to check for any abnormalities, and it was confirmed one week later that our baby had Trisomy 21 (Down Syndrome). I had never felt so horrifically sad in my whole life. I was only 27 years old, why would I have a baby that was anything but “perfect”. I have since changed my definition of “perfect” – Kiara is more than perfect to us. Following the diagnosis, our whole world fell apart – it was constant hospital visits for the rest of the pregnancy. I had to have excess amniotic fluid drained, 4 goes at stopping the labor and steroids to help our baby’s lungs develop for the best chance of survival. The few weeks between diagnosis and Kiara’s birth at 32 weeks (2 months early) were hell on earth. Looking back I don’t know how we got through, had it not been for the love and support of my husband, family and friends I surely would have not got through. The main contributing factor was lack of understanding, knowledge and information. What would the future be for our child and for us? Would we cope having a child with a disability? What did Down Syndrome mean for our previously happy and healthy family? And would our baby even survive? We welcomed our daughter Kiara Rose Risku into the world on the 11th August 2002. She was 2 months premature and so very small (1.7kgs). Kiara breathed on her own initially until her tummy and bowel surgery on day 2 when she was put on life support to help her recover from the major surgery. Our next major hurdle was when Kiara was just 5 days old. We had been told by a cardiologist prenatally that Kiara’s heart was fine (children with Down Syndrome often have heart problems). The cardiologist also told us that there was a very slight chance that the baby’s heart may have a problem that he was missing but he would check the baby thoroughly once it was born. We were called to the intensive care unit because the doctor had just reviewed our baby and wanted to talk to us. The cardiologist spoke to us quietly and confidently. He explained that Kiara had a fairly large hole in the top two chambers of her heart, a hole in the bottom two chambers and a valve that needed repairing. So much for no heart problems. Once again we were devastated, helpless, angry, sad and a million other emotions all at once. Our little baby would not survive without major open heart surgery. Could life get any worse? At least it was all fixable and they were confident that Kiara would be fine after the heart surgery. We were dealt another blow when Kiara was just 14 days old and still in the highest level of intensive care in Australia. I had noticed that Kiara had become lifeless, even more so than previously, she could not even move a muscle. Hundreds of tests, 6 transfusions and 2 lumbar punctures later the doctors found that Kiara had contracted Meningitis. A bug had got through the lining of her brain and her life was slowly slipping away. My husband and I kept a vigil by her humidicrib day and night willing her to live and promising her the world if only she would survive. I just wished I could do some personal bargaining like give up a limb or something from myself just to have her survive. It seemed we were losing the battle and after much soul searching I decided that this was all too hard and that this tiny baby should not have to suffer any more. I decided to let my baby know that if it was too hard she could give up the fight. It was cruel for her to have to struggle to survive and it was killing me. Every day I would say “We can’t do this anymore” and each day we did do it. I made the decision and I knew Kiara could hear me talking to her because her heart rate etc would react on the machines when I spoke to her. I told her it was Ok to let go and that we understand that it is all too hard. From this point Kiara’s health improved. She was certainly a little fighter. We had been told several times over the last week that she may not make it and here she was proving them all wrong. Kiara very slowly improved but the meningitis had left her heart weak and she was not able to breath without oxygen and had been fed through a tube since birth and tube feeding became part of our lives. Kiara underwent open heart surgery on the 22nd of October when she was just 2.9kgs and 10 weeks old. I hit an all time low – handing Kiara over to the theatre nurse was by far the hardest thing I will ever have to do. I felt that was it – I would never see my baby alive again. Surgery went fine and Kiara was in Intensive care and on life support once again. I have never seen anything so horrible and scary as my baby with so many leads, drips, drains, and wires coming out of her tiny body. Kiara’s lung collapsed on the second day after surgery and thick sputum blocked the breathing tube that was keeping her alive. Kiara needed to be resuscitated and she survived yet another large feat. Recovery after the heart surgery was nothing short of amazing. Kiara’s skin was no longer see through and she could move her arms and legs strongly. We left hospital 8 days after open heart surgery for the 1st time since Kiara’s birth. This baby was finally ours, she no longer belonged to the doctors and nurses who had kept her alive through some very scary times. The fact that our baby had Down Syndrome had become totally irrelevant over the past 3 months. Kiara was so medically unstable that Down Syndrome never played a major part in our thinking for at least the first 6 months. Our little girl is now 3, she is quite delayed in all areas of development which is not unusual since she has spent over half her life in hospital. Kiara has had 15 collapsed lungs, over 52 chest infections and pneumonias and has hydrocephalus from the meningitis. She has just started to stand on her feet and cannot walk or talk but is good at non verbal communication. Kiara is an absolute joy and has given our family so much that it is hard to put it into words. We want to give Kiara all she needs to make her life as special as possible and we know that with the continuous chest infections and collapsed lungs that Kiara’s life span has been severely depleted. This is a learning process for us all and she already has taught us so much. We feel very fortunate that we have been blessed with this little girl. We have had to face many challenges as a family while still trying to be a family for Kiara’s big brother and her little sister who have also been through a lot because we are continuously in hospital with their sister. Life has been hard in many ways but it has only made us stronger. Vanessa Risku

First written when Kiara was 3