I experienced a few scares throughout the first four months of my first pregnancy and after many bleeds, and two ultrasounds, I was diagnosed with a uterine abnormality called “bicornuate uterus” or basically having a heart shaped uterus. My obstetrician assured us that it was simply caused by the point down the middle, which was bleeding as the baby grew. He told us that by 18 to 20 weeks it would stop and my condition would pose no threat to our pregnancy and baby. I breathed a sigh of relief as the bleeding finally stopped and, as promised our baby was none the wiser.
We had our 20 week scan and were delighted to see we would be expecting a perfectly healthy baby girl. At 23 weeks and 5 days old I woke up in pain, I thought I was having my first “Braxton Hick experience” so I sat down on the couch and tried to relax. After an hour the pain became really intense, we decided to go to the hospital just to be on the safe side. I was feeling pretty confident that I would be told it was Braxton Hicks and would be sent home, but I was wrong. The doctor told me I was 3.5 cm dilated and she could see my waters.
Despite trying to stop my labour (or at least stall it long enough for the steroids to help our babies lungs) my labour was progressing faster. We were told that our baby would be very small and under-developed, and her odds of surviving were 50% at best. If she did survive, there was a very real chance that she could be disabled for life. The doctor asked us to decide whether or not we wanted to revive her once she was born. It was one of the hardest decisions we have ever had to make, but we decided to give our little girl a chance at life.
11 hours later Beth was born. She weighed 650grams and her APGAR score was 4. An hour later I was taken to Intensive Care to see her for the first time. My world stopped as I gazed at this tiny pink life, so beautiful and so very frail, hidden amongst tubes, wires and machines. It was so overwhelming, I couldn’t believe what had just happened. I kept looking down to find my once pregnant belly completely gone and a pink little baby in a glass box in front of me! It was amazing. She was so small and frail, but she was ours and we loved her right from the start.
Beth’s lungs were so underdeveloped that she could not breathe on her own, and was on life support. She couldn’t eat or drink, because her tiny body was not ready, her eyes were still fused shut and she had suffered a brain haemorrhage during delivery. We spend every moment with her, forgetting to eat or sleep. We knew we may not have long to be with her and wanted to savour every moment that she was alive, every breath she took, every wriggle, every time we put our hand into the incubator to touch her foot or hand.
Beth had a duct in her heart which was causing blood to fill her lungs. She had been put on medication to try to close it, but the treatment was unsuccessful, at 21 days old and weighing a tiny 518grams, she was sent to have the duct in her heart closed with surgery. Being born at 24 weeks meant that she had very frail and underdeveloped lungs. She required life support since birth, to keep her breathing. To be able to tie off the duct to her heart, they would need to deflate her lungs, the surgeon explained that many babies this small, deteriorate on the operating table. Beth was in theatre for just over an hour. It was the longest most terrifying hour in my life, but the surgeon told us that she had survived the procedure.
Beth slowly recovered from surgery and began to gain weight. When she was 59 days old, I was able to hold her for the first time, and I cried with joy when the nurses handed her to me for the very first time. I couldn’t believe I was holding my baby. At 60 days old, Beth was still on life support. Her lungs were so damaged from the ventilator, that she was diagnosed with severe chronic lung disease. The only way she could have a chance to come off life support, was if we agreed to try a high risk drug, which can cause bleeding on the brain, disability and death. Without it we were told she had little to no chance of surviving. She was to be given two courses of steroids to reduce the inflammation in her lungs and hopefully she would be able to breathe. If they did not work, it would be time for us to let her go.
At the end of the two week course, Beth had improved just enough to try taking her off life support. We hoped and prayed she would breathe, and she did. Beth was put onto a CPAP machine. The machine helped to keep her lungs inflated so she could breathe easier. When she was 3 months old, she developed a complication from the high oxygen levels she was exposed to during ventilation. Her retinas had grown abnormally, and the scarring meant that they would detach and she would go blind. The only option was to perform laser eye surgery. The surgery stopped the scarring, and although it had caused her to loose some peripheral vision, her sight was saved. We were told that Beth would be at risk of blindness and would need to see an ophthalmologist (eye specialist) every 9 months for the rest of her life to check that her retinas were still attached and healthy.
After Beth recovered from surgery, we were moved out of Intensive Care and into the special care nursery. From here we could get ready to go home. We were told that she would need to come home on oxygen equipment, so we ordered some ready for her discharge. 3 days before we were ready to take her home, she felt very hot. I asked the doctor to check she was ok. He confirmed that she had a fever, and we were told it was likely that she had been over wrapped and was just hot. At 11pm we said goodnight to our sweet baby girl, and headed home for some sleep. At 3am we received an urgent call from the hospital, “you better come in quick” said the nurse. Beth was found in her cot, blue and not breathing and the nurse said “she was resuscitated and is back in Intensive Care, she may not live the night”.
We sped back to the hospital, terrified that after all she had been through, and how close we were to bringing her home, we would loose her. She was given antibiotics and we later found out that she had a staphylococcus infection. Staph is a common and potentially deadly bug, often found in hospitals. We had heard many stories of premature babies catching staph and dying due to their compromised immune systems. Once again, Beth pulled through and we knew for sure that she was a fighter. After 112 days in hospital, we finally took her home. Despite having an 85% chance of death or disability, Beth is in perfect health. We have regular psychology, physio, speech and occupational therapy assessments and she is above average developmentally. She is beautiful, clever and the sunshine of our life. We are so happy that we gave our little girl a chance at life, and we feel so lucky to have her in our life.