We finally arrive in Penang – exactly one year after our intended arrival date, and well past due we share this story.
For those of you who have met Ayla, you will know that she has a condition called radial dysplasia. She has the fourth stage that is defined by the absence of a radial bone and thumb. Often the condition is associated with heart and renal issues, along with a variety of other potential complications. It is only now that we have her with us that I can share her birth story, or more specifically, her en utero story.
I have heard many people say what a miracle babies are and what a complex process their development is, particularly in the womb. I understood this but never really appreciated it. It was truly amazing with my first to follow the month-to-month stages of growth and how quickly complex systems develop.
I got the condensed version with Ayla as we didn’t discover we were pregnant until the 15th week, well into the second trimester. We were sailing up the eastern Australian coast when I discovered a lump in my stomach, of which it took several days for me to convince John it wasn’t a figment of my imagination. We were a few days out of Cairns when he agreed that there was something evident, of which I said “it is either a good lump, or a bad one.” I figured it was either tumour or a baby and I knew right away which I preferred. A few days later we were able to confirm good news, and the following day we got an ultrasound.
It was such an unexpected surprise. For several reasons we thought I was unable to conceive, so to learn that we would be joined by yet another was fantastic news. During the ultrasound we were told that we would be having a girl and that all looked good in the scan. We were jubilant – a daughter for us, a sister for Braca! We returned to the receiving room to wait for our photos and our alarm grew as our wait was extended. Couples arriving after us came and went while we still waited, and we were finally called back into the examination room. There is a funny thing that adrenalin does to shift the space around you. I am sure everything slipped sideways and created a void as voices started to drift off when the doctor started talked about problems that had been found. Further tests were recommended. Specialists were referred. I walked out in a mechanical daze until I was freed by the open space outside to break down and cry. I called my mother and the words I remember repeating were “my baby is broken.”
We spent several weeks in Cairns seeing specialists who helped us understand what Ayla was dealing with. We had a child with a malformed limb with a host of other serious complications that could present on delivery. Her kidneys could fail. She may need heart surgery at birth. She may have mental disability. Blood transfusions.
Fifteen weeks along and we had some major decisions to make. Were we to carry this child to term? Should we head directly to New Zealand and the safety of a medical system we would be supported by? Could we dare carry forward with our plans and spend the pregnancy in remote regions with an at-risk pregnancy? Those few weeks without a plan and so many factors outside our influence was a very stressful period. I cried my full for the sorrow I felt for a child I couldn’t do anything to help, and worried over the possibility of a future with a special-needs child.
In the end, we decided to press on. Atea and crew would sail from Australia through Indonesia as planned, with sights on Singapore as a base for temporary work. We discussed this with the specialists and agreed that we would get periodic ultrasounds along the way. I did some research on potential delivery locations and found a gynecologist in Penang, Malaysia, who shared a birth philosophy that I was aligned with and who agreed to deliver Ayla for us. I owe my deepest, most sincere gratitude to Dr. Narinder Shadan for his support along the way. His responses were prompt, his manner gentle and sincere as well as professional, and his patronage gave me the confidence to carry forward.
We had a magic season – our trip through Indonesia was filled with dances and festivals, celebrations and local hospitality. It was easy to let my worries get lost in the fullness of our lives, and I embraced that. It was easier for me to put the pregnancy out of mind when results of the ultrasounds along the way confused us with a myriad of different results, all worse than the last.
Lombok and the northwestern Gili group provided a significant change to our plans. Through some close sailing friends I was introduced to Julia, a gynecologist-on-holiday who sat down for a consultation with me – it was a very fortunate introduction. We discussed Ayla’s condition and the risks we were taking of a delivery so far from home. She offered to join me during my next ultrasound appointment, as she would be traveling through Lombok and close to the hospital I would be visiting. On the evening, she was there in advance of us – “us” included John, Braca and I and our French friends Marie & Michel and their two children Nali & Niobe, 2 and 4. We walked in like a fortified battalion of misfit tourists. The doctor I consulted with was using old equipment and was under trained, and so Julia stepped in and ran the ultrasound for him. The conclusion was that I needed more sophisticated equipment to get the results we were looking for, and so we were referred to a specialist clinic across town. Off I went trailed by my eight-strong support team.
The results of the second test indicated that Ayla was loosing weight. She was in the 10th percentile and with it our focus shifted to low birth weight concerns. We decided that we had too much at risk to deliver Ayla overseas and made the decision to return to New Zealand for her birth.
But first, we had to get there. We had a floating home half way between points and needed to find a safe place to leave her. We ran through a few, mostly impractical, ideas before settling on a plan. My proposed solution – ludicrous on reflection – was to sail from Bali to Borneo, sail upriver and trek wild orangutan, then help deliver Atea o Singapore. Once there, I’d hop on a plane with a belly fit to bust and a two-year old, leaving John to job hunt in Singapore while I flew to NZ to deliver a baby and return once we’d received clearance. After persuading John to this plan, I realized that leaving him to his bachelorhood while I roamed Auckland knocked up and homeless was, while a wildly creative plan, definitely not a sound one. Eventually we agreed that I could keep the orangutan if I acceded Singapore. We would put the search for a contract in Singapore on the back burner and take it one step at a time. John would return with me to New Zealand to join in the birth of his daughter. If we could return to Atea soon after delivery we would address work options then. If we needed to stay in New Zealand at the request of our doctors we would be in a position to do so.
Having agreed on plan, we then needed to get both ourselves and our boat over 1000 miles to Danga Bay Marina in Malaysia, with 4 weeks remaining before the flight cut off. Women are denied access to airspace a month prior to their due date, which left us with a lot of distance and little time to get Atea secured before we had to fly.
While our pace was quick, we did schedule in a detour up the Kumai River in Borneo to visit wild orangutan in their natural habitat. With few places around the world that offered such a unique experience I was determined to get there (see video on our blog: X). John always teases me that when I am given option A and option B to choose between, I always choose A and B. We were also able to celebrate our son’s second birthday with our fellow cruising mates before signing off on the season. We then followed a quick pace to get Atea to our designated marina and did so with three days to spare. We madly packed bags and boat not knowing how long our departure was for. I expected a quick return and packed accordingly, however prepared the boat for an extended absence to ensure she would be keep well should be gone longer than anticipated. It was a mad few days in sweltering heat getting things ready for our departure. No feet up on soft cushions for the abdominally-enlarged. We worked steady and hard together, with a day to spare for a sight-seeing tour of Singapore before departure. All would have rolled without comment had the airline staff not stopped me at check-in, two short hours before departure, and demanded that I get a medical certificate confirming me fit to fly. Talk about sending a woman into early contractions! We raced out of the terminal to get a stamp of approval from an airline-approved doctor. Fortunately, the checkup was a blitz – I was asked my age and weight, told to flash him my ankle for visual inspection and waived out the door. It was the quickest, most expensive consultation in my life, and I thanked him for it. We were cleared for travel. Holding my belly, we sprinted off to departure count down and boarded our flight just in the knick of time.
The day after our return I had appointments with the specialists to discuss Ayla’s case. It was quickly determined that Ayla had slipped from the 10th percentile to the 3rd and the suggestion was made for an immediate C-section. I was totally unprepared for that recommendation. We had only just arrived, we were sleeping in a friend’s basement and had made no preparations to receive an infant.
We agreed on a contingency plan and monitored Ayla’s weight, however it was quickly evident that she was continuing to struggle and so on my subsequent assessment I was asked to immediately check in for an induction. A long, drawn out two days later, I held my beautiful baby in my arms.
One look at Ayla and I fell absolutely head-over-heals in love. Now, this is the amazing thing about nature: I had spent six months protecting myself and all the barriers crumbled the minute she was placed in my arms. I looked down at the most beautiful face I’d ever seen; blue eyes that reflected my father, graceful fingers that reflected my mother. Johns smile. My nose. I felt so proud of her for the miracle she made happen – she had survived on a single-vein umbilical chord with half the blood supply of a standard birth and she had made it.
It was the right decision that we had returned to New Zealand. We were wrapped up in a medical system that made things happen. As an American it was amazing to be in socialized care within a country with such excellent medical support. Things just happened without draining me of all my sweat, tears and dollars. Within days of Ayla’s birth, she had a full set of detailed full-bodied x-rays, a brain scan, a heart scan, bloods drawn and genetic testing – all reviewed by the top pediatric specialists in the country. I was visited by a Psychologist who offered free support counseling should I need it. Ayla’s pediatric doctor made several visits to check in. After all the emotional pressure of this pregnancy, it was amazing to fly home and fall into the arms of such an efficient medical system.
As always, it is the unknown that is the scariest. I remember a poignant moment when the psychologist called in. After a brief summary, I said how deeply I had fallen in love with my daughter on our first day together. She looked at me with very serious eyes, nodded, and asked, “and how are you feeling about her today?” She was looking for all the things unsaid. But there was nothing other than this floating feeling of elation. We’d made it. Ayla hadn’t been whisked off to an operating theatre or intensive care in her first moments. None of the disasters that we’d feared for her had presented. She had been placed in my arms on delivery and stayed with me every moment since.
And here we are, a few weeks shy of her first birthday. Back onboard Atea in the town we’d intended as her birthplace. I had sent Dr. Narinder an update when Ayla was born and said we’d touch base if we made it to Penang. On arriving, I followed up on that promise and received a reply filled with his typical warmth and enthusiasm. Two days following he came down and joined us at a pub near the marina and we met in person for the first time. He was introduced to the baby we’d hoped he would deliver and we were able to thank him for the support he gave us along the way. Had he not been there, we would have made very different decisions in regard to our movements last year.
While our pregnancy had been a difficult one, no day since her arrival has been. We’d spent six months preparing for the worst and every day since celebrating her progress. During that meeting a comment Dr. Narinder made hit home in a way I had never registered similar comments before. In talking about Ayla, he said what a miracle she was. When I acknowledged him he stopped, held my gaze and repeated, “No. She really is a miracle.” And for the first time I understood just how very, very lucky we were.