Marama's Miracle Journey
This is a story about my time throughout pregnancy and in life thus far.
The entire experience has been a real rollercoaster ride, full of highs and lows, challenges, victories and pending outcomes. There were lots of medical personnel involved including mental health, maternal mental health, midwives, and specialists. Adding to this team are all support groups from Church, Facebook, friends, Voice for Life, and Pro-Love: most important of all my faith, and relationship with God.
I was 41 years old, when I found out that I was pregnant. At the time I was visiting a friend in Hamilton. During this visit, I became ill with severe nausea and vomiting. It was through this same period that the world was hearing about a new virus that had broken out in epidemic proportions, causing countries to close borders and calling for lockdown. Lockdown level 4 was announced which meant that everything was closed and no one was allowed to leave their homes unless it was for essential needs and services.
For those in hospitals or heading to hospital there were strict restrictions including no visitors or only one or two visitors were allowed. Full wash and sanitization procedures had to be adhered to. Hospitals were fast filling up with people who had contracted and been struck down by this virus. The virus is now known as Covid-19 or CoronaVirus. I ended up having to go to hospital, via ambulance, due to nausea and vomiting, caused by a gastric issue that flares up occasionally.
Once it starts, the only way to stop it and get better is a hospital admission, lots of IV fluids and anti-emetic medicine. This time, the gastric issue was further complicated by the discovery of pregnancy. Once the gastric condition was under control, I was discharged. I spent the rest of the lockdown period resting and nursing myself with the help of my friend until lockdown and self isolation was lifted. Therefore, in terms of the pregnancy, the first trimester was relatively quiet and no medical intervention was able to take place.
Once I returned home, to Auckland, the pregnancy medical care, tests and regular check ups began. I was still living in an emergency boarding place, awaiting for a suitable accommodation to come available through Kāinga Ora (Housing NZ). At the same time as meeting all my obligations as required by Kāinga Ora, WINZ, mental Health, and my own self cares, as well as attending all pregnancy related appointments, such as scans, blood tests etc I needed to find a midwife.
From the time of the the first blood tests, this journey would be one of overcoming many obstacles, barriers, risks, and odds. There was an impact from every negative comment, prediction, expectation regularly and repeatedly spoken to me and over my unborn child. These negative outlooks would continually become worse as the pregnancy went on. It was relentless, hurtful, stressful, and caused a lot of anxiety. I was trying to keep focused on the good things, positives, and just wanting to enjoy and make the most of experiencing pregnancy. Becoming a future mum. Something that I believed would only ever be a dream. Prior to this, I was convinced that I would forever be childless. There was no way that medical staff were going to let up with their negative views, talks and agendas. In fact growing more intent and intense in nature the more medical professionals coming into the fold.
More and more it felt and seemed clear to me that they all had their own ideas and agendas. They were determined to convince me of their views and beliefs, always coming back to them repeatedly asking and trying to get me to terminate the pregnancy. It also seemed to be driven by the fact that I was older in age for carrying a baby. My impression was this being intensified by the change of laws around euthanasia and abortion. Throughout this experience it seemed that these law changes paved a way for an easy way out, letting them off the hook, confusing the way they practiced and their obligations when they swore the hippocratic oath; to preserve life and doing no harm.
The lady that took the first scan said the fold on the back of my baby’s neck was bigger than normal. Indicating that my baby may have Down syndrome (Trisomy 21). A blood test was taken shortly after. When they came back, I got a call from Middlemore ultrasound, in the birthing department. Results showed that the baby was at high risk of possibly having Down syndrome.
The staff from the department recommended an amniocentesis test to get more information and further determine whether the baby did actually have Trisomy 21. Since it was only 28 weeks into pregnancy I didn’t want to take the risk of losing baby to miscarriage by having this test. Regardless of whether the test would come back positive or negative for this condition, it wouldn’t be a reason and neither could there be any reason that would prevent me from choosing to go through with pregnancy, seeing it right to the end. Before long, Trisomy 21 was ruled out.
Another ultrasound scan, they questioned the shape of the head, a hole in the heart and length of femur. This prompted a referral to Auckland Hospital to paediatric cardiac specialists and for the request of amniocentesis. At this stage, it was too early in pregnancy to risk amnioscentosis test and miscarriage. Further scans at Auckland Hospital confirmed heart defects however the severity and cause was still in question. Still, a team of cardio specialists for children came together and a meeting took place to discuss what this meant for my baby and for surgery to take place once the baby reached 2-3 months old.
A few weeks passed by, then it was time for another blood test, which confirmed I had gestational diabetes. A diabetes midwife came on board and worked in the background. Communications regarding treatment and control was via an LMC midwife. By now, quite a considerable amount of healthcare personnel and providers had now come on board in regards to me and my baby’s care. The negative talks, suggestions, requests and comments didn’t let up. Rather for every new person or persons that came on board, it became more and more frequent and relentless leaving me feeling pressured, stressed and upset. Several times I requested that these talks cease. I was well aware, not about to forget what was at stake and what I was facing. They kept persisting and implying I was either in denial or not in touch with accepting ‘the reality’ of the situation. In their minds there was no hope and no good outcome for this baby.
For me, I had hope, belief, and faith in my God. 34 weeks in and I finally agreed to have an amniocentesis test done. Once the results came back, I got the heartbreaking news that my baby had Trisomy 18, also known as Edwards syndrome. Auckland Hospital’s children’s cardio specialists withdrew and declined heart surgery for the baby due to complications of Trisomy 18 and ‘life expectancy’. Baby and I were referred back to neonatal care at Middlemore due to the medical outlook and their expectations for my baby’s survival, and a palliative care plan was put in place.
Another meeting was called with neonatal, mental health, support worker, pastor, ultrasound staff, midwife and bereavement care all attending. My Ma (Lorene Neilson from Pro-Love) and I, to the best of our ability tried to make it clear to all said persons that we wanted full care for the baby and for every measure to be taken to give the baby the best chance of life and living. Our words were twisted and turned, put in our mouth, with them implying that I wasn’t being realistic and in denial. Eventually they had made it sound and look like Ma and I had agreed to their plan of palliative care and no resuscitation. Rather only comfort cares until the baby's passing. We were told that the baby was unlikely to make a full term pregnancy. If she made it to term, it was unlikely she would survive birth, much less a few minutes or hours after birth.
Furthermore, she wouldn’t breathe on her own, would never be able to suck or swallow, wouldn’t grow, wouldn’t be able to do anything. Come 36 weeks, after much discussion, reflection and prayer, I decided to opt for an elective cesarean. Turned out to be a good decision. My baby made it to 38 weeks. Marama arrived into the world, blue, but breathing on her own. She was given some oxygen, and fluid removed from her airways. In the minutes and hours following, her colour improved and she continued to go from strength to strength. Marama met all the checks and tests including responses and reflexes. Marama fed from the breast, the bottle, sucked and swallowed.
Now she is 7 weeks old, has exceeded all expectations, and continues to do well. The only symptoms presenting themselves are ones related to heart condition. The fact that she is responsive, has no restrictive physical deformities, her organs are functioning well (which is evident because she feeds), she’s breathing on her own, alert, growing, toileting, and gaining weight. Bearing all this in mind, if in fact Marama does have this Trisomy 18, it is a milder form. So far, she is compatible with life, all contrary to what we were told by medical experts. Still, it seems that the neonatal and childrens cardio specialists are ignoring what is in front of their eyes. The neonatal doctor was baffled with how well Marama is doing.
Regardless, all the specialists are still sticking to what they have read and their knowledge, even though all expectations have been well and truly exceeded - myself and family believe that it is plain to see that Marama wants to live, therefore deserves to have us support her in her fight for life. After (repeated) requests for another meeting of all persons involved with my baby’s care and support, one was held and a review of her health was carried out, as well as a new plan. A plan that reflects and supports Marama in life and living, including surgery to mend the hole in her heart. Without this surgery Marama will likely eventually succumb to heart failure. Not the Trisomy 18. By having the surgery, Marama has a 50/50 chance of her life reaching full potential.
Evidence can’t be ignored. Miracles happen all the time and are possible. Marama is one of many miracles. If I had listened and given in to the medical experts advice of terminating the pregnancy, Marama wouldn’t be here today, being a miracle every day that she remains with us. I would’ve had to live with life long heartache, pain and trauma of cutting short a life, remaining childless, and a raft of ‘what if’s’ for the rest of my life. Marama is strong and has overcome so much.
She has chosen to live.
Not only is it my job as a mother, but it’s also the job of medical professionals to support her in living and life. Giving her every chance possible by doing everything that can be done to help her achieve that. It is the very least that she deserves. We all owe her that much. Marama has a right to be treated and given the same chance as anyone to reach her full potential. There are other children with all sorts of health complications. Many of them where every measure is taken to give and support them in life and living. Why should Marama not receive the same chance and opportunity. I believe that heart surgery is needed and would give Marama this very chance at reaching her potential. Without the surgery, it is like us deciding and telling her how long she is allowed to live. It isn’t for us to decide who lives or dies. It is the job of medical professionals and the humane thing to do all that we can to help Marama live.
Every life is precious.
You can follow Marama’s journey here: www.facebook.com/LifewithMarama/