Robilliard, Rhian

[left:6e86630abf]http://www.cherubs-cdh.org/Album/new/robilliard-rhian2.jpg[/left:6e86630abf]What a crazy year 1999 was. On January 10th, Simon & I were married in Melbourne, Australia. The following day, we jetted off to Hamilton Island for a glorious 7-day honeymoon. On the last day of our holiday, the weather had turned nasty, & we decided to sit in the lounge area of the hotel & have a drink & laze around. I had noticed that my period was late but thought maybe it was due to the whirlwind nature of the previous months. However, just to be sure, I bought a pregnancy test & since we had little to do because of the weather, I decided to take the test. To my absolute delight, it was positive, & Simon & I were ecstatic. What a wonderful start to our married life. We celebrated with a glass of champagne. I sipped at mine, immediately mindful of the delicate cargo I was now carrying.

Just because we didn’t feel we already had enough on our plates, we decided to accept a posting up in Papua, New Guinea for Simon’s work, commencing 10 days after we returned from our honeymoon. In this time, we had to pack up our house, store all our furniture, farewell family & friends, & get to an obstetrician. It was hectic but exciting.

I managed to fit in an appointment with an Ob-gyn two days before we departed, & fortunately, I really liked him. We had decided that I would return to Melbourne to have the baby, as the medical facilities in PNG are not fabulous. We hadn’t told anyone of our news, as we wanted to wait until after 3 months to make sure everything was fine.

We arrived in PNG on Australia day 1999 & settled into our new lifestyle. I had organised to see an obstetrician in Cairns for checkups until it was time to go to Melbourne. I felt great throughout the pregnancy; I experienced no morning sickness or any other discomforts that so many other women are afflicted with.

In March, Simon & I traveled down to Cairns for our first appointment. We were terribly excited & were thrilled when we saw our baby for the first time on the small monitor in the doctor’s office. From what he could see, our baby looked fine. I couldn’t tell which way was up, the screen was so small. Added to which, it resembled an untuned TV, the picture was so fuzzy. We spent the next few days in Cairns celebrating, & upon our return to PNG, we made our announcement.

I spent most of my time at home decorating the nursery. I remember being in there one day pottering around when suddenly a voice rang out as clear as a bell. It was eerie, & I’ll never forget it. I was looking at the cot at the time, & the voice said to me, “Your baby will never sleep in this cot.” I was horrified with myself for thinking such a thing & put it down to first mum’s nerves. It sounds ridiculous when I mention this incident, but having spoken to other mothers who have lost children, they say they have experienced a similar thing.

May came around, & it was time for another checkup. I was 22 weeks pregnant. I had had very strong feelings that we were going to have a girl, & sure enough this was confirmed after our scan at Cairns Diagnostics. This time the scan was far more in-depth, & all throughout the appointment, I asked the technician if all was alright & if everything was where it should be. I never received a definitive answer. The scan seemed to take a long time, but having never been through it before, I knew no better. Now I know what the delay was. I felt uneasy for the rest of the day, but Simon & I went out to dinner that night to celebrate the news of our little Princess.

We had an appointment the following morning with our doctor, & he took us through to his office & sat us down. He looked solemn, & he asked if the technician had spoken to us yesterday. I replied hurriedly, “No, what’s wrong?” Then the craziness began. Alien words such as “diaphragmatic hernia” were bandied around. It was a blur to me, & I just burst into tears without really comprehending what was being said. I’d heard of Down syndrome & spina bifida, but what the hell was this? All I knew was that it was not good. Our little girl was going to be in for a battle.

It took me a couple of days to be able to even pronounce “diaphragmatic hernia,” & now it rolls off the tongue. I was struggling to understand just what we were dealing with. I needed knowledge; I needed information; and I needed to understand. We called our obstetrician in Melbourne, & he did not sound optimistic. However, we arranged to fly down to Melbourne the following week to commence tests & decide what our plan of attack would be. All I took from our meeting with our doctor was that our girl had a defect, & she would require an operation as soon as she was born. Death was never mentioned.

We arrived back in PNG in a stupor. I had called my parents whilst in Cairns & babbled at them about a condition that I had no idea about. Mum tried to pacify my hysteria, but how can anyone pacify a situation that can’t be controlled. Now that I had access to my computer again, I spent the next week looking through different sites, gathering all I could on CDH. Simon & I spent hours researching, & we were horrified with the results. To this day, I don’t know if it was a good thing or not to have ingested so much information. I was in tears most days; it was heartbreaking to read the tragic outcomes, but then hope would filter through in a case of a survivor. I had had no idea that the condition was so hateful.

We searched in vain for reasons for the condition-- what had I eaten, had I taken a medication, was it something in the environment that I was in contact with? Simon asked himself questions right down to the type of deodorant he was using. We needed answers, but none were forthcoming.

Simon & I left for the long flight to Melbourne with a sense of desperate hope. Perhaps we’d arrive at the scan, & they’d tell us it was all a horrible mistake & that our girl was fine. They’d slap us on the back & laugh at the misunderstanding. As it turned out, there was no mistake, & there was no backslapping. We stayed with my mum & dad, & as the extent of this drastic situation unraveled, I was destined to remain with them until Rhian (we’d decided upon her name) was born.
I had an amniocentesis also to make sure that there weren’t any other problems we had to deal with. Fortunately, there weren’t, but then what we were coping with already was more than enough. The hernia was confirmed. It appeared that Rhian’s intestines had worked their way up into her chest cavity, she had a left-sided CDH, & the tip of her liver was also protruding into the chest area. Her heart had been pushed over to the right side, but at least it was functioning normally. Just how well her lungs had developed was a mystery & would remain so until she was born. I hated everything about this condition-- its uncertainty, its secrecy, its indiscriminating nature.

Simon had to return to Lae, PNG for work. He had stayed down in Melbourne for two weeks with me, but unfortunately, just because we had a situation didn’t mean he could shirk his work responsibilities indefinitely. The separation was hard, as we had clung onto each other for dear life since we’d received the news of Rhian’s CDH. Sim did manage to come down to visit periodically, but it wasn’t ideal, & we missed each other terribly.

There are two sides to finding out early in your pregnancy about CDH. The first is that you have an amazing opportunity to try everything you can, no matter how desperate, to increase your child’s chances of survival. I had steroid injections to try & increase her lung capacity; I took vitamin E, as I had heard that it could help with immature lungs. I was a desperate mother, desperate to save her daughter. The other side to knowing your child has CDH early is the worry & waiting . . .
I had to fill in time without going insane. I realised to my disgust that I had hardly bought a thing for Rhian. I had lost my appetite for children’s stores once we learned of the hernia, but now I was determined to remain positive, as it was my only choice. How could I give up on Rhian when I was all she had? I went straight to the nearest kids store, & I bought up big. I went on a shopping frenzy, buying everything pink & beautiful I could lay my hands on. I was determined to keep her, & that meant if I bought things for Rhian, then she’d have to stick around to use them.

Time crept by, & each week I went to my obstetrician for checkups that did not alter. I was also going into the hospital to have Rhian’s heart monitored every Tuesday, & all was proceeding as normally as it could under the circumstances. Rhian was due around the 16th of September 1999, but when I visited my obstetrician one week, he stated that he believed she would be ready to come out in the next 6-8 days. Simon was still in PNG, so I called him immediately & got him to change his flights to come down earlier. He organised to fly down on the 6th of September. Saturday the 4th, I decided to gather together all of my girlfriends & have a dinner at a local restaurant. I knew that once Rhian was born that things would never be the same, so I gathered everyone around as a kind of “last supper.” Rhian was always a good kicker, & she let herself be known to me daily, which I loved. I read her stories & chatted to her constantly, & she would respond with a tirade of thumps. I kept thinking, “How could a little girl that is so strong possibly have anything wrong with her?”.

Sunday morning came, & she was very quiet. In fact, for the remainder of the day, I barely felt her. I prodded her to try & gain a reaction, but she was not playing that day. I was growing increasingly concerned so that by Monday morning, the 6th of September, I called my obstetrician & explained my fears. He told me to go into the hospital, & they would check Rhian’s heart through fetal monitoring.

My mum had been to every appointment with me when Simon couldn’t be there with us, & together we drove into the hospital. Usually the monitoring took between 20-30 minutes; this time I was there for over an hour with different nurses & doctors coming in to check the read- outs. Finally, they contacted my obstetrician, & he came down & stated very matter-of-factly that her heart rate had increased & her activity had decreased, so they were going to whip her out by c-section.
“When?” I questioned, a little dumbstruck by it all. “Right now,” was the response. I burst into tears immediately. “Can’t we wait for Simon?” I pleaded, but I was met with a negative response. I begged them to leave her where she was, knowing that whilst she was still inside me, I could protect her, but the ramblings of a terrified mother were not enough to convince the medical staff that that was the best option.

They prepped me for theatre, & my heart was in my mouth. I wasn’t frightened for myself; I was absolutely beside myself with fear for my little girl. I cried most of the way into theatre, & in there my mum met me, all gowned up. She held my hand as the doctors started, & a few minutes later, the most stunning little girl was held up, & I couldn’t believe she had come from inside me. There was no cry, just a scrunched up little face that did not look impressed.

Rhian was whisked away immediately to the corner of the room where a hoard of doctors started to work on her. There were so many people in the room, & yet I only had eyes for my girl. A nurse kept me informed as to what they were doing to Rhian. I was later told that she fought like a trooper the entire time the doctors were attempting to insert the tube into her nose to put her on the respirator. They had so much trouble with her that they ended up having to insert it down her throat instead. She apparently thrashed around, & that made me feel proud.

Next thing I knew, they had brought her over to me bundled up. Her little face was tightly screwed up, letting me know that she was not happy about being taken from her warm home. I gave her a quick kiss on her forehead, & then she was gone, raced down to ICU.

I lay in recovery in a state of shock. My baby was born, & yet I wasn’t holding her; she was now in the hands of strangers that I had to literally trust with her life. I felt alone & useless. I couldn’t help my daughter anymore; she was in the hands of others. No information was available the half hour I was in recovery, & when I was finally wheeled back to my room, my mum was waiting for me with some Polaroid pictures of Rhian the doctors had taken for me. Rhian had a little pink woolen beanie on & what seemed like dozens of tubes emerging from every inch of her body. But what I noticed most about her was how beautiful she was. I could see past the medical paraphernalia, & all I saw was a perfect little girl.

As soon as my anesthetic wore off, I popped some painkillers & got the nurses to wheel me down to ICU. There I saw Rhian properly for the first time, & I was in love. I was also confused. She didn’t look sick. She was a reasonably good size at 6 lbs 1 ounce. Especially since the ICU had several premie babies there, Rhian looked a picture of robust health in comparison, & yet she was so much sicker than they all were. No other babies were hooked up to respirators; no other babies had tubes coming from each foot, wrist, & belly button. No other baby had machines that beeped & whirred. It wasn’t fair.

Rhian was quite a looker & would have been a heartbreaker for sure. She had the most wonderfully shaped lips; the top lip was a perfect M shape. Her hair was a glorious strawberry blonde, & she had masses of it. I studied her for the next two days. 48 hours is not a long time, certainly not long enough to live a life, but that’s all our girl was given.

Simon arrived that night at 10.45 p.m. after a day’s journey from PNG. He was devastated that he’d missed Rhian’s birth, but we went down immediately to ICU so that he could see his beautiful daughter. We clung to hope for the first 24 hours, but on Tuesday night, the doctor came into my room with the worst news imaginable. I can’t remember what he said to us because I didn’t want to hear him. I whaled, I cried, I screamed, “No, No, No,” as though by this outburst I could change things. My heart was being ripped out. What I do recall being told was that we should spend as much time as we could with her now, not that we weren’t doing that already. We went down that night , & I got to hold her for the first time. I finally got to hold my baby, attached to all of the instruments that were keeping her alive. We stayed with Rhian until the early hours of the morning, then got a few hours rest & went back to her at 7 a.m. that morning.

I nursed Rhian for 7 short hours. I took in every inch of her body. I noticed that she had my big feet & that she had a pixie ear just like her daddy. I talked to her & told her how much we loved & adored her, how sorry we were that she had to be put through all of this. I rambled on, & Rhian patiently listened – I know that she heard me. The doctors had taken her off the sedatives, & she had begun to move around. It was a wonderful sight to see our girl kick out with her legs. We spent a couple of hours helping her open her eyes, & I like to think that she saw us. I was in denial right up to the last minute when they took her off the life support machines. I kept believing she would make a miraculous recovery & prove them all wrong. It never happened.

Simon had to bring me back to reality when he gently told me it was time to let her go. We didn’t want her to pass away hooked up to the machines, so before that could happen we had to release her ourselves. I couldn’t bear to see them take away her life support, so I waddled into the designated room they had kept for us & sat & waited. Simon stayed with Rhian, & then he carried his daughter in to me. She was so quiet, but she was alive. For the first time, I got to see her face clearly, & she was even more beautiful than I had thought. I held her free from the tubes & machines, & for a brief moment I could pretend we were a normal happy family. That moment soon passed as Rhian took two quick gasps, & then she slipped away from us there in my arms. Devastation.

There we were, the three of us alone at last. Nurses, doctors, & machines had always accompanied us, but now it was just we three. We stayed & held Rhian for hours after she left. We bathed her & dressed her in a little outfit that we were one day hoping to bring her home in. It had three sheep on the front of it with the numbers 1,2,3 – like counting sheep, which I thought was appropriate, as our girl had gone to sleep, but she was just going to sleep a little longer. After what seemed only minutes, a nurse came in to take Rhian from us. It was the hardest thing to hand over my daughter. Our hearts were broken; we were nothing but empty shells. Our future had been ripped from us, & we missed our brave baby.

I have never known a pain like it. To lose a child is the ultimate agony. We buried Rhian a week later in a quiet little cemetery by the ocean. At her funeral we had brightly coloured tulips with bows on them that people could either keep or give to Rhian. We also had 40 multicoloured balloons, which we released – it was a very uplifting experience. Little hearts were handed out to everyone & on the hearts they could write a note to Rhian & express their feelings. The tulips & the hearts went into her grave before she was buried. My sister had written a poem to her niece, & it was also buried with her.

I know a lot of people choose to cremate their children, but personally, Simon & I thought that Rhian had been through enough, & now we wanted to lay her to rest. We got to say a final farewell to her at the funeral home the day before her burial. There we dressed her again in a warmer little suit, placed a pink teddy in her tiny coffin along with her daddy’s hanky, which we had used to wipe away our tears, & a photo of the three of us together. We then wrapped Rhian in a pink bunny rug, tucked her in, & kissed her goodnight.

At the time of writing this, Rhian would now have been 17 months old. I often look at other little girls around her age & wonder what my precious little baby would have looked like. She will always be perfect in her Daddy’s & my eyes. I miss her every single day & wish I could change it all. Rhian now has a little brother, & when he is old enough he will know all about his big sister Rhian. I am often asked how many children I have or if Caden is our first, & I always reply, “No, he’s our second. We have two children, our first is our beautiful daughter Rhian.” And that’s the way it will always be.



Written by Rhian parents, Caitlin and Simon Robilliard (Australia)
2001