We were expecting our fourth child, and due to my age, we were offered ultrasound/maternal hormone-test by week 12 of the pregnancy. This is common practice in Norway, where we live. The results showed a great chance of trisomy 13 or 18, so we were offered amniocenteses for confirmation. By week 15 they phoned us with the result – our baby, a girl, had full trisomy 18. We were devestated!
The geneticist offered us an appointment the next day for termination of the pregnancy. The disorder was “incompatible with life”, he said. Ending the pregnancy was no alternative to us – we wanted to give our daughter a chance, and it felt much better to let nature run its course.
We informed our other children about her diagnosis, telling them their baby sister would likely not make it to birth. My oldest son, aged 9, cried and cried, then he wrote her a poem, naming her Kristine. My husband and I added the name Evy, which means life.
There was no organized follow-up of us – the geneticists were not used to patients chosing to continue such pregnancies. My gynecologist at our local hospital kept encouraging me to terminate the pregnancy. She told me to think of my other children, and that it was a waste of time if I truly wanted another baby – I wasnt exactly getting any younger…
We asked for diagnostic ultrasound at a bigger, specialized hospital, to check for abnormalities common in t18 babies. Our daughter had a VSD – a hole between the ventricles of her heart. Other than that they could find nothing wrong. Her fists were clenched, and her head strawberry-shaped, as are typical signs of t18.
We were offered ultrasound check-ups twice monthly, but the doctors gave us a feeling we were waisting their time and resources. Are t18 babies not worth caring for? I left the hospital crying every time.
A friend of mine recommended another hospital in a town 400 miles away. A visit there was well worth the long drive. We were well received, we met a gynecologist with experience regarding t18-pregnancies, and who helped us work out a birth plan. A pediatrician who had treated lots of these babies talked us through alternatives of care should Evy Kristine be born alive. She told us she had developed a new respect for t18 babies throughout her career, as these babies seemed content throughout their short lives. We also met with a social worker. I left that hospital in a good mood, not crying this time.
Evy Kristine continued to live throughout the pregnancy. I cherished every movement I felt, she was just as active in my tummy as my other kids had been. I was prouder than ever before of my pregnant belly, proud to be carrying such a special child, proud that she, against all odds, had made it this far. Strange, isn´t it?
Our other children were encouraged to join us for the ultrasounds, to touch my tummy, feel her kicking, to make drawings for her and so on. This might be the only way they would know their baby sister. I wanted them to have a memory of her.
As time passed, we grew more and more unhappy with the way our National hospital regarded t18 children. We were lucky, and were allowed to deliver in another hospital in Oslo, where we were received in quite another way.
We planned for the delivery so that family members could bring our other children to the hospital right after birth. We knew the time with Evy Kristine could be very short, and we wanted her brother and sisters to be able to see her and to hold her. Those memories would be so important to them.
Towards the end of my pregnancy, I felt as I was going to explode, as there was an excess of amniotic fluid, as is common in t18-pregnancies. Friends kept asking me if I wasn´glad it would soon be over, and I felt like screaming back at them “NO”! I was not looking forward to delivery, because that meant my baby would die, if not right away, then within hours, days or weeks. I wanted to keep her inside me as long as possible.
Labor was induced in the morning April 15th, 2010, and Evy Kristine was born in the evening. She was blue and quiet, so my husband took her away to bag her. We are both anaesthesiologists, and had discussed this beforehand, that we wanted to give her a chance to survive birth by bagging her, then see how strong she was after that. The neonatologist arrived and took over, and Evy Kristine was soon breathing and screaming on her own. What a beautiful sound!
Her brother and sisters arrived at the same time as the minister, who performed a baptism while I held her in my arms. It was so wonderful. They all then got to hold her for a while, until she got tired and was taken to the NICU for CPAP – to make her breathing easier. We were now so optimistic, believing we would keep her for a while. My husband and I got a few hours of sleep, we were exhausted.
In the morning I held Evy Kristine in my lap, skin to skin, and from that moment she was always in someones arms. After a few hours she suddenly seemed agitated, she turned blue, and we thought we were loosing her. I was so scared. We called for her siblings, and just as they walked into the room, Evy Kristine got better.
We were moved to a quiet room, where the whole family could stay with her. She was passed around to all her nearest family members – aunts, grandparents, siblings.
In the evening we celebrated her one-day birthday with a birthday cake.
She had received a nasogastric tube for feeding, and we were so happy. As the tube fell out, the doctors tried to put in another one, this time without luck. This was a strong indication that her esophagus ended blindly, or had a narrow point. It was such a sad turning point. From being so optimistic, we now knew we would not get to keep her for more than a few days, maximum. Yet, at the same time, we were so grateful that we got to meet her at all. Our feelings were all mixed up, and every minute with her now felt like a gift.
I slept with her in my lap her second night. She had a few episodes of apnea, and I was terrified we would lose her every time. She was given morphine injections every hour, this helped reduce the number of apneas, and the next morning they put up a continuous infusion for her. She was calm, and seemed content, sometimes dreaming, sometimes looking up at us. It was so wonderful and so sad.
We celebrated her second birthday that evening, and she slept in her fathers lap all night.
The next day she was peaceful until noon, when we again thought we were losing her. As her sisters and brother entered the room, she calmed down. She looked changed, though, and her heart rate was slowing. We removed the CPAP, which now seemed to give her discomfort, and I held her for the next 5 hours, her last five hours on earth. She gradually faded away from us, with her sisters playing on the floor, and with her brother , mother and father singing songs to her and comforting her. We told her to let go, to not struggle for us anymore. She had lived so long for us – three whole days!!!!
But it was so hard, so painful, to let her go!
We took her home, and kept her there until her funeral. Her brother and sisters helped lay her in her casket, filled it with drawings, pictures and stuffed toys.
This is now almost five months ago, and I have finally been able to make a web-site in Evy Kristine´s memory:
Unfortunately, it is in Norwegian, but Google translator might help?
I can be contacted at firstname.lastname@example.org