This is PAULA and SAMUEL’S story…
In mid 2016, my husband and I had a surprise positive pregnancy test. With four boisterous kids already
I was hanging washing on the line when it happened. A gush of liquid between my legs, enough to soak through to my shorts. I was 15 weeks pregnant and it puzzled me. I had two boys, 4 and 2 years old, so I should have known enough about pregnancy to realise what had happened. Instead I went inside and changed and carried on with the housework. Maybe in denial. Hoping it was nothing.
The next day, more liquid. This time I was having lunch with my husband and I told him, and that it had also happened the day before. He urged me to call the hospital. Fear began to creep in. Reluctantly, I dialled the number and spoke to a midwife who told me to come to ED for a check-up. The fear grew.
At the ED, while waiting to be seen, we met a doctor we knew who asked why we were there. We told the story and he suggested that maybe it was a hysterical pregnancy. I was taken aback at the suggestion, so insensitive at such a sensitive time.
After a long wait for an ob gyn to arrive, an ultrasound confirmed my fears. My waters had broken. What doctors called premature rupture of membranes (PROM). An internal examination and the doctor telling us this baby has no chance of survival. Come back tomorrow for a procedure. The doctor turns to leave but we press him further asking, “What procedure?”. A termination. Shock and confusion, tears. My husband saying we would go home to consider and me thinking there’s nothing to consider. The baby’s dead. Let’s have this procedure now so we can go home and grieve and put an end to this day on which our child has died.
Instead I let myself be led by my husband to the car, where I call my mum and explain, through tears, that the baby is good as dead. My mum, cautious, pragmatic, arguing that as long as the baby’s heart is beating there is life, and hope. Wait and see what happens. We can’t wait, there’s the risk of infection (you don’t realize, you didn’t hear the doctor, you didn’t talk to him). Wait, she urges.
At home, my mother in law has made us dinner and comforts us with recounts of God’s faithfulness in her own trials and tribulations. Our catechists also urge us to wait.
The next day, back at the hospital, another ultrasound. No fluid, only very small pockets. This time we speak to a Thai woman doctor who sympathises. We tell her we can’t have a termination, the baby is still alive, though probably not for much longer. We explain that we are Catholic and ask for alternatives. We ask if bed rest will help. You can try taking it easy she replies, diplomatically, yet making it quite clear that in her opinion it won’t make a difference. After another discussion in which she stresses the risk of infection and consults with her superior she compromises, offering us 10 days of antibiotics. After which we will be on our own. We take them and go home. We will see what happens, day by day.
At home I am plagued by thoughts of going into labour when I am on my own, my husband at work. At having to wait helplessly for the inevitable to happen, for my body to miscarry or develop an infection. Every day I wake up wondering if today is the day that I will receive my baby’s tiny body, born before time.
My mother helps in every way she can. Cooking, cleaning, accompanying me to the weekly doctor’s visits and ultrasounds which always reveal extremely low fluid levels, minding the children while I have weekly blood tests to screen for any sign of infection. And I find that I am not alone in my suffering.
The pregnancy continues. Some doctors reproach me for continuing the pregnancy, telling me that my child will be forced to carry around oxygen tanks like an 80 year old smoker, if by some miracle the baby manages to survive. Others are more encouraging, repeating that it is my right to choose.
On the way to the hospital we always pass a disability services organisation and I wonder whether I will find myself in there one day, if the baby manages to survive.
We hear stories of other couples who have lost babies under similar circumstances and I try to steel myself for the inevitable. My husband visits a funeral home with our parish priest to discuss arrangements for when the time comes.
Somehow the pregnancy continues despite continual fluid loss. My mother suggests that it would be better for the inevitable to happen sooner rather than later, to spare me more days of suffering and I cry, because it isn’t up to me and I don’t know day by day what is going to happen.
We pray to St Gerard of Majella. A priest tells us the story of St Gianna Beretta Molla and we pray to her too. At the end of our prayers I silently add ‘may your will be done’ remembering the line from the book of Job, which we read shortly after my waters had broken; ‘if we take happiness from God’s hand, must we not take sorrow too?’ And I pray to be able to accept God’s will even if it is different from my own.
Somehow we make it to the 24 week mark, when a baby’s chances of survival outside the womb (in the case of a normal pregnancy) greatly increase. The doctors suggest steroid injections to help develop the baby’s lungs. They tell me the baby is in a breech position and will probably have to be delivered by caesarean. I don’t allow myself to hope.
More weeks pass. I don’t wash old baby clothes or make the usual preparations for welcoming a baby home.
At the 30 week mark I begin to haemorrhage. At the hospital the bleeding doesn’t stop. The only option is an emergency caesarean, and given the position of the baby it will have to be performed with a vertical incision, which will impact greatly on subsequent pregnancies. I never realised I wanted how much I wanted more children until now, when I am being told how much it will limit my options. Before going in we ask the surgeon to perform a horizontal incision if at all possible. My mother explains that we are Catholic and would like more children, and the surgeon reassures us that he is Catholic too and will try his best. Soon I am shivering uncontrollably on the operating table, full of dread at the prospect of meeting this baby I will have to part with.
Finally, my husband tells me it’s a girl. She is whisked away before I have a chance to meet her but my husband tells me he heard her cry, which he takes as a good sign. He stays with me while my mum accompanies the baby to the neonatal care unit.
Later, we learn that the surgeon was able to do the caesarean with a horizontal incision, the baby being just small enough at 1.2kgs to be delivered in this way.
In the maternity ward my dad comes to visit and is full of joy at the birth of his granddaughter. Unable to believe that she is actually alive despite the doctors’ prognosis, I tell him that I think his happiness is a little premature. Her lungs won’t have developed without the amniotic fluid, she won’t be able to survive. Unperturbed, he tells me that it’s true that we don’t know what will happen in the coming days, but her birth deserves to be celebrated nonetheless.
When I finally meet her, she is tiny and fragile, in a blue lit humidicrib surrounded by wires and sensors. I’m afraid to hold her and afraid to love her, certain that it won’t be for long.
We name her Amata, which means loved.
After some days I am discharged from the hospital and we go home without her. Leaving her behind in the care of strangers pulls at my heart, yet we have no choice.
We visit her every moment we can, and hold her. It’s difficult to fit everything in to the day; expressing every few hours, looking after the kids, house work, cooking, traveling back and forth to the hospital. We are blessed to have the help of both our families.
At the hospital one of the nurses tells me I should make more of an effort to visit more often. I go home and cry, stressed and frustrated, feeling guilty for not being able to be there as much as I would like. My dad scolds me for not standing up to the nurse, after everything we had been through and the fight to keep her in the face of opposition from some of the doctors at the hospital.
One day as I am holding her, a doctor doing the rounds of the neonatal care unit with his trainees stops by her crib. After recounting her medical history, the doctor adds that it is becoming more common for these types of babies to survive. I am shocked at hearing him, having been told in no uncertain terms and on multiple occasions throughout my pregnancy that the baby’s chances of survival were nil. Before I get a chance to question him, the group moves on and I am left with anger at the thought that her remarkable story has been so summarily dismissed and that many other babies will not be given a chance at life under the same advice that I had received.
Another day I am surprised to learn that she is breathing on her own. Shortly after, she is transferred to an open crib. I begin to hope that she will come home with us after all.
Week after week she continues to grow.
After seven long weeks she is strong enough for us to take her home. I still can’t believe it.
At the final check the doctors find a problem with her hip that is eventually diagnosed as hip dysplasia. They send us home with a pavlik harness and tiny pillows to help shape her misshapen head. I don’t care. She is alive and it is nothing short of miraculous.
In the next few months we find ourselves in and out of hospital as Amata is diagnosed a number of times with bronchiolitis. Her lungs are weak and she needs oxygen to help her breathe, even ending up in ICU for a few hours, but she recovers after each bout of sickness.
Her hip is operated on when she is 9 months old to position the hip ball inside the socket and she is in a plaster cast for 4 months and then a brace for another 3. There are many appointments with a physiotherapist (at the disability support organisation I was used to passing on my way to the hospital!) before she finally learns to walk, two months shy of her second birthday.
In the next few years we have a number of appointments with the paediatrician before finally being discharged from his care when Amata is 5 years old. Her lungs have grown strong and are now as good as any other child her age. She doesn’t even have asthma.
The orthopedic specialist has asked us to see him next when Amata is 10 years old. Her hip function continues to improve and the only concern now is the early development of arthritis.
We are grateful to God and to the church for the life of our daughter. For the prayers and support of our families and communities. Were it not for them, our daughter would not be alive today. And we have told this story to encourage others to know that as long as there is life, there is hope.