My accreta and NICU journey began when I fell pregnant again within 3 months of giving birth to my second son. I still dreamed of having a v-bac, natural, drug-free birth experience. I decided to go to a different hospital this time, one further away, but with an excellent midwifery program. We found out I was expecting another son at the first 9 week ultrasound. I joked that we would try for a girl the next time. Everything was fine, I had minimal morning sickness and no other problems. I had an ultrasound at 20 weeks and was asked to come back to get better scans of the baby’s heart as he would not turn around and the pictures were unclear. I went back at 23 weeks for another check-up. In my examination with the midwife and doctor, the doctor was concerned that she could feel the baby very clearly through my tummy. It was found that I had no amniotic fluid around the baby when they did an ultrasound, and furthermore that I also had placenta previa. The doctor told me that it was highly likely I would lose the pregnancy or that my baby would be severely disabled due to the lack of fluid surrounding him. The doctor’s advice was that I should have a medically determined termination of this pregnancy. I went through all the guilt of perhaps it was my fault for falling pregnant again so soon after having KJ, but was told that the condition was nothing to do with the timing of the pregnancy. I was sent to RHH, a hospital over 3 hours drive from where I lived to have further investigations with more experienced technicians with better equipment. It was discovered that on top of the lack of fluid and placenta previa, I also had placenta percreta, a condition where the placenta invades out of the uterus. It is particularly dangerous as it can invade other organs like the bladder, bowel and kidneys. I was told that my accreta was caused by my c-sections rather than the pregnancies being close together. On further tests, I also had gestational diabetes. I was told I had to stay at this hospital on bed-rest and not allowed to leave the ward as there was too much risk of me having a hemorrhage. They were unable to find the reason for the amniotic fluid loss, despite an MRI scan.
I spent 4 weeks in hospital, 350km away from my family, with my 5 month old son having to be cared for by my partner and my 6 year old son being looked after by his father. I saw them once a week when they managed to drive over and stay at RHM or one of the other charitable houses, for a few days.
I was petrified this time. There was no alternative but to have another operation. This time the operation would be much more serious. There was no chance of keeping my uterus, as the placenta percreta would leave it destroyed. It would have to be removed when I had the c-section to deliver my third son. It was explained to me that my third son had very little chance of survival, without severe abnormalities as he would no doubt be born extremely premature. If he survived the delivery, he would likely have muscular contractures due to the lack of amniotic fluid and his prematurity would present other issues like heart problems, lung developmental problems, brain damage, cerebral palsy, bowel developmental problems, immune development problems, and all the associated issues of a long term stay in a hospital. Many babies develop terrible conditions as their prematurity does not allow them to fight infections. A humidicrib is the only alternative to the womb, but it is not a substitute. My job would be to get as far along in the pregnancy as possible without endangering my own life. I was advised to have a termination on numerous occasions by every doctor and specialist I saw. My partner said he wanted me to have a termination as he did not want to have a child with severe abnormalities.
Every day I was approached by doctors giving me the worst case scenario. Even so, I was optimistic and determined. I had decided to have my little boy no matter what. I knew his name. I could feel him inside me, I felt connected to him. I wanted this little boy more than anything. It would be my last pregnancy, as I had been told that even if I terminated this pregnancy it would not be safe for me to have another. I said I most definitely did not want to have a termination. I decided to be as informed as possible. I had a tour of NICU, so I would know what to expect and it would not be such a shock when it was my baby in the humidicrib. I watched DVDs about premature babies and what was involved with their care. I found prem baby websites and read the stories posted by the parents of prems. I had weekly ultrasounds and noted the weight progress of the little one inside me. I knew from reading everything I could that the bigger the baby was at birth the more likely it would survive. For the first week, I had a cannula put in my arm or hand every few days. It was flushed every 6 hours. When my veins collapsed from over-use, and even the expert anaesthetists couldn’t find veins on me anywhere, my arms and legs covered in bruises, I had a procedure to put a Hickman’s Line in. This is a large drip line that goes directly into one’s heart and can transfuse a large amount of blood in a short amount of time. This was in case I hemorrhaged or needed blood during the operation. A c-section –hysterectomy is a complicated operation and I would have to be under a General anaesthetic. I would not be awake to see my baby come into the world.
I had steroid injections to help my baby’s lungs develop, these injections made me hyperactive and I couldn’t sleep for the entire night whenever I was given them. I had insulin injections before every meal, in ever increasing dosages. I put up with a month of hospital food and begged my mother to send me some care packages with home cooked meals. Her home cooking and the visits from my partner and kids saved my sanity. Visits from other relatives and friends also saved me from the boredom of bed rest. I made friends with some of the nurses. I avoided other nurses who were inherently cruel. I made lists of the doctors, anaesthetists, specialists and nurses who were constant visitors to my bedside. I wrote about some of my experiences. I wrote a Will, just in case. I waited.
One morning I got out of bed to go to the toilet and felt a rush of fluid. It was pinkish amniotic fluid. Everyone was now on alert, as they didn’t want me to start having contractions. I was 26 + 6 days gestation. Things settled down and I was constantly monitored. When I was 27 weeks gestation, I started having contractions. I was given medication to make them stop, which gave me severe headaches. I had the medication 3 times over the next couple days. I was then informed on the morning of the 24th November that the team had decided that I should have the operation that day. I was to be prepped by firstly having a procedure to put balloon catheters on my kidneys to help prevent blood loss during the operation to remove my uterus. This procedure involved putting tiny wires in through my nerves, which was very painful and uncomfortable. Not the least part of my discomfort was the masses of med students interested in the procedure, where the wires were put in through my groin. One gives up all sense of modesty and privacy when in hospital. The other aspect of discomfort was how much it hurt. It felt like someone was stabbing me with long knitting needles in various parts of my body. I also had the sensation that I was urinating constantly. Quite uncomfortable, with lingering problems of nerve pain in my left leg over a year later, which fortunately eventually resolved with many visits to my chiropractor.
Then I was taken into surgery, where all manner of machines were ready and waiting, including a machine that would recycle all the blood I lost from surgery back into my body after filtering it. The humidicrib was ready and waiting too, along with the team from NICU who would care for my baby.
After a few attempts to get another needle into my hand to monitor my blood pressure, I told the nurse to do it after I was under anaesthetic as her attempts were too painful. Then they gave me the anaesthetic and I knew no more until I woke up in recovery.
I was told that the placenta had begun to invade my bladder and that a section had been removed and repaired. I had tubes coming out of me everywhere, two drainage tubes in my stomach, a urinary catheter, and of course the Hickmans Line still in my heart, where it would remain for another week in case I had an embolism. Apparently I had only lost 2 litres of blood during the operation and the Cell Saver had worked very well, they were all very pleased. I had a horizontal scar, the bikini line one, rather than the vertical one they’d told me to expect.
I wasn’t allowed to see my baby Alexander that day despite repeated asking. I was assured by my partner and the nurses that he was alive and doing as well as could be expected. The journey with Alex began the next day when I was allowed to see him, wheeled in on my hospital bed next to his humidicrib. He was so tiny, covered in tubes and wires. I didn’t even know where his head was. His skin was translucent, I could see veins and the outlines of his tiny bones. He was so fragile. I was optimistic however as he’d been born a good weight for a prem, nearly a kilo. We were allowed to touch him, just to put our hands over him. My hand and my boyfriend’s hand covered him completely. We were not allowed to stroke him, as that would stimulate his skin too much. It was a different world to have a tiny prem baby. I had to unlearn everything I knew about my previous two babies and learn how to do it the prem-mum way. It was ten days before I had my first kanga-cuddle with Alex. It was skin to skin and then blankets tucked over us to keep his body temperature up. I had to sit right up next to his humidicrib as the wires and cords had to stay attached to monitor his breathing and heart-rate. When a prem gets too relaxed lying on their mum’s chest they can stop breathing. It is a steep and fast learning curve. You get to know the beeps, alarms and whistles very quickly. You even stop freaking out when the alarm for bub’s breathing goes off, or when his heart-rate drops…. You learn to pat him on the back gently and wait for the machine to register his heart-rate again. You learn to read his nurse notes, the medical data that shows his blood-work results. You celebrate when his TPN goes up by 2ml per hour. You celebrate again when he graduates to being tube fed your expressed breast-milk. You cry when he has to go on the machine to “vibrate oxygen into his lungs” because you’ve read that only a handful of babies survive this machine. You cry with relief when the doctors do scans and tell you the hole in his heart has closed. You cry with relief when he has a brain scan that comes back normal. You cry when he has to have a blood transfusion and you see a huge needle in a tiny arm. You cry when he has his eyes tested and the results are that his vision is not yet affected by the oxygen that he has to be given to stay alive. You celebrate when he goes off having so much oxygen. You celebrate each weight gain and lament each weight loss. Each small milestone is celebrated. They are huge steps for one so small.
Alex is now 2 years and 3 months old as I write this. He walked at 16 months old. He talked clearly at 18 months old. When he said Mama, my heart melted. He is a completely normal little boy. He has temper tantrums. He gives me hugs. He is susceptible to lung problems and gets croup often, and we deal with it.
As for me, my body has healed as best it can. There are issues of course. You can’t go through trauma like that and not have issues. Alex still sleeps in the same room with me, or I can’t sleep. I wake up if his breathing changes as I have become very highly attuned to his patterns. I have no uterus or cervix anymore. In some ways I miss having periods as it is something that marks you as a woman to have them. It was something that helped me keep in tune with the rhythm of life, the seasons and the tides, having my moon-times. I can never have more children and that is a loss I have to deal with. I’d always wanted to have a girl and that will never happen now. And yes, I have 3 beautiful children that I am grateful for. And yes, it is still hard to give up the dream of my little girl that I will never have. There are many emotional issues, with c-sections and with accreta. Feelings that I’d let my baby down because my body did not work properly. Feelings of anger that I’d been badgered into having an unnecessary c-section with my first pregnancy that led to the accreta with this pregnancy. There are not many women who have been through this, although due to the increase in c-section deliveries the number of women who get accreta will also increase. The emotional and physical toll is heavy and needs to be documented and researched, and I feel very strongly about this. It’s not just about having the operation, it’s also about what happens afterwards, the emotional turmoil of being in NICU, away from home, away from family and support networks, about the toll that long hospital stays can take on relationships, many of which break down due to the stress of the events, mine included.
The healing journey is much longer than the accreta and NICU journey. It’s all about being gentle with myself, crying when I have to, and feeling what I do and being honest about it.
It’s confusing because I’m angry and sad and grateful to be alive, all at the same time. I had accreta. I have a beautiful little boy who is worth all that I went through and I would do it all again for him.
I’m lucky. I’m strong. I’m a survivor!