Jennifer’s Story: A Tale of Two Babies

ROMAC does not get the opportunity to receive follow-up feedback from some of its children from remote locations, but here are Jennifer’s stories, from 2011 and 2015 written by the visiting Australian doctor who first found and referred Jennifer to ROMAC.

Jennifer’s Story: Part One

December 24, 2011

You know that awful sinking feeling you get when you are confronted by a fear you would prefer to avoid?

Sue (ED Educator, Sale Hospital) and Fiona (ICU Educator, NH) had taken a break during our eye clinic at Avunatari, on the small, picturesque island of Malo. They had noted a small listless baby girl in the arms of her mother, and sensibly suggested we take a look. We had often joked that our motto is ‘We do more than Eye Care’, so why not? You need a change from taking blood pressure, glucose checks, and ear examinations after twenty in a row.

Why not? Because I had that awful sinking feeling when I examined this small, cute four-month old girl called Jenifer [sic]. Last year I had seen a baby of similar age, and with similar features in Vanuatu. Her name was Rowena.

Rowena was six-months old when we met her in the unpronounceable village of Abwatuntora, on the island of Pentecost. We had split our team into two that day and I had been inland helping out with the clinic. On return to our accommodation – the four-bed male ward in the small hospital at Abwatuntora – Robin our GP colleague insisted I see this baby even before I hopped out of the back of the ute we had traveled in.

“Can I have a cup of tea and put my feet up first?” I pleaded.

“No. Come and see her first. Mum brought her to see me several hours ago and she’s been waiting all this time. I think you need to see her first.” I could see Robin was worried and knew something was not right, and did not want to say anything in front of all the others, including the mother.

“Where’s a good paediatrician when you need one?” I thought. “Surely Robin, as a GP, has more paediatric experience than me?”

Over a cup of tea I chatted with Mum in my broken Bislama, the local pidgin tongue. Rowena had been a healthy term baby six months ago, but had caught “the flu” from one of the family after five days and had never recovered. A waning appetite and very little weight gain, but no fever or jaundice left me puzzled. Yes there was malaria around – they were living on the coast – but a visiting foreign doctor several months before had diagnosed an irregular heart beat and prescribed digoxin tables. Of course these ran out after one month and there is no local pharmacy.

Rowena was alert and active but small for her age, had a fast pulse, was breathing quickly, and had a pansystolic heart murmur, but there were no other signs of heart failure. There were no facilities anywhere on the island for an X-ray or ECG, let alone a echocardiogram. Where’s a good paediatrician when you need one?

Somehow I managed to get hold of Frank Shann (Paediatric Intensivist, RCH) on my mobile phone and he agreed she might have a VSD (hole-in the-heart) and, if so, would be likely to need surgery soon. Through ROMAC (Rotary Overseas Medical Aid for Children) we arranged for her to go to the Mater Hospital in Brisbane. A few weeks later, the funds, passports and visas, accommodation, and medical referrals were complete.

Sadly Rowena died in her mother’s arms during the (internal) flight to Port Vila on her way to Australia for heart surgery. It was the worst timing imaginable. None of her family was with her on the flight to support and console her. The pilot would not turn around and take them home. Would it have been better to have told Mum and Dad that Rowena was very sick and let her die in her mother’s arms at home?

With this in mind I was not keen to repeat the tragedy again with Jenifer. Nor had Sue and Fiona yet heard the story of Rowena.

Like Rowena, Jenifer was a healthy term baby who had failed to gain weight and was now down to the 10th percentile. She was the youngest of four children and none of the other family members had been ill.

My hand-written notes on the 27th July read:

Jenifer  4mths. 3 brothers 10, 8, 3yrs. NVD 3.4kg 23/3/2011. Weight 5.1kg on 4/7/11. No weight gain last 3wks. Breastfed. Immunisations up to date. Cough last few days; now cleared. O/E Lethargic & crying. HR 144. RR 60. T 36.7. Lungs clear, Prominent AB L axilla. Pansystolic m. maximal at apex. Tongue not cyanosed. Liver edge palpable, non pulsatile. Family speaks no English.

Even Hugo, our team leader and retired surgeon, could hear the murmur. As with Rowena, there was no paediatrician to refer Jenifer to; the closest X-ray facilities were 3-hrs away by boat and truck, and no echocardiography machine for 2,600km! I guessed we were in for some serious discussions, including end-of-life topics with a mum who spoke no English, and came from a culture of which I had limited knowledge. This was not going to be easy. I was not keen to repeat Rowena’s experience with Jenifer’s parents.

“Is the father in the village?” I asked.

“He works in other village, but yes, he is at home.”

“Can you bring him to the clinic for a chat?”

Later with both parents present, and Mai, a local woman with good English skills, and the local church Pastor, Sue, Fiona, and I explained that Jennifer had a very sick heart which was not their fault, but it would prevent her from growing up. I guessed her life span was maybe one to five years without treatment. However, following specialist assessment and cardiac surgery in another country it may be possible for Jenifer to live a normal life. Repeated interruptions were necessary for translation and clarification.

By this stage Mum had tears in her eyes. It was a difficult time for all of us, but especially for her. Furthermore none of this was within their means or even that of the whole community. They could not afford a GP visit let alone major heart surgery requiring travel and accommodation.

I explained that we could apply to ROMAC and they may be able to provide for and cover the medical and travel costs. This was going to be a big decision for them: traveling overseas to an unfamiliar country, an unfamiliar culture, an unfamiliar language, an unfamiliar health system, with a risk of serious complications and no promise of a good outcome! I could not give any guarantees.

None of this I was sure about, because I had very little information to go on.
 My diagnosis may be wrong. They might get to Australia and be told Jenifer was too sick to be treated.

I suggested they talk with family and meet again in 2-days when we passed through their village again on our way back to Port Vila and Australia.

Ironically, it was Children’s Day: a national day of thanks and celebration of children, like one big birthday party. Across the nation of Vanuatu, villages and towns get together and hold picnics, sports carnivals, music festivals, carnivals etc. So wasn’t Children’s Day meant to be a happy occasion? It wasn’t for Jenifer’s parents.

We returned to Australia, and by mid-September ROMAC had agreed to fund Jenifer’s operation at the Starship Children’s Hospital in Auckland. The heart surgeons agreed to accept her for heart surgery should it be necessary, and the passports and visas were being finalised, together with a network of Ni-Vans living in NZ to support them once they arrived. On the 23rd September I received an email from our local Program Director informing us that Jenifer and her parents had arrived in the capital, Port Vila.

Whilst awaiting their flight to Auckland on 1st October it happened. Jenifer’s condition had deteriorated. She was more short of breath. Was there a flight to Auckland tomorrow? Arrangements were fast-tracked so that they could fly to the following day. The Vila Central Hospital also agreed to send a doctor as a medical escort because of Jenifer’s condition.

They arrived safely in Auckland and an ambulance took them straight to the hospital. The initial tests performed on Sunday confirmed she had a serious hole-in-the-heart (large VSD) and was very sick. She was having difficulty breathing and feeding. She underwent further tests on the Monday and the surgeons scheduled her heart operation for Tuesday, three days after arrival.

Thankfully the heart surgery went well and both parents were ecstatic. In the words of Geoff, the local Rotary representative:

“Great news… the open heart surgery for Jenifer was undertaken this morning and has been very successful.

And what a thrill it was to be next to mum and dad when their daughter was returned from the operating theatre and she opened her eyes and smiled at Mum…. WOW!

Mum burst out laughing and giggling and for the next hour we couldn’t stop her talking, and yet for two days before she had barely opened her mouth.

I asked mum and dad what they wanted for a special treat and they said KFC Chicken. As I write we’ve each just finished off our own (KFC) lunch box!

Everyone is happy. Dad and the doctor from Vanuatu return on Saturday and, all going well, mother and Jenifer will return to Port Vila in two weeks time”.

Someone from Jenifer’s village said later: “All Christmas before, we celebrate one Baby. This Christmas: two.”

Happy first Christmas Jenifer.

Jennifer’s Story: Part Two

June 8, 2015

Those of you who have insomnia and are regular readers will recall that on Saturday Grandpa told us an unusual story about a wedding without a bridal party. Then on Sunday Grandpa told us a sad story about a funeral. So tonight Grandpa will tell us a true fairytale. This fairytale is called A Tale of Two Babies, Part 2.

Once upon a time on an island far far away lived a little baby girl named Jenifer (spelt with one ‘n’) and her three older siblings and her parents. She lived on an island called Malo, previously known by the French as St Bartholomew Island, or in the local dialect as Tamambo, but that’s another story…

You will remember from Part 1 of this Fairytale that Jenifer was only 4-months old when we first met her, and she was very sick due to a congenital ‘hole-in-the-heart’. She was rescued by Hugo Boss, Princess Fiona, Tannaman Zhi, Dental Bob, Fancy Nancy, Miss (Sue) Luganville 2011 and Gullible Graeme. (Ed: By the way, if the reader missed Part 1 of this story then travel back 4years in time to a blog titled A Tale of Two Babies.)

Jenifer was sent to Auckland Starship Hospital for Kids in late 2011 for urgent heart surgery. She nearly died getting there she was so sick with heart failure. But she didn’t. Miraculous.

Now I was returning to her home village of Avunatari on the island of Malo with another Team to run the clinics once again.

Was she still living there? Is Jenifer still alive? Would her mother remember us?

We arrived late Sunday afternoon and were greeted by several I remembered e.g. Pastor Wala, Colina and Steven the local husband and wife nurse practitioner team. After informal introductions I could contain myself no longer. I had to ask. Yes, Jenifer and her family were still living in Avunatari, and someone will send them a message to come to the clinic.

The next day (Monday) clinic was in full swing. We ended up seeing nearly 200 patients for the day. Several times I looked around the milling throng of mothers and small children but could not recognise Rose or Jenifer.

Late morning I was busy completing several tasks when I saw a familiar face through the doorway. We stared at each other for several seconds and then both smiled. I was too busy with what I was doing to immediately greet her. I looked up and she had gone from the doorway.

A few minutes later I was free and wandered outside into a mass of waiting faces to search for them. They were waiting some distance from the clinic. I walked over, greeted Rose with a hug, and looked at the baby she was carrying. Too small to be Jenifer. At mums feet stood another older child. Could this be Jenifer? Yes, but she was unrecognisable as a 4-year old from the baby I once knew. Rose and I talked for a few minutes about her family and Jenifer’s progress. She is healthy, eating, growing, talking and heading for school in another year or so. I could hardly believe this was the sick little baby we had seen in this very spot 4-years ago.

David our paediatrician gave her a thorough examination. The scars had healed well, her heart functioning well, she is now on the fiftieth percentile for weight, not the tenth.

But who was this in Rose’s arms? It was Jenifer’s baby sister Lisa, only 4-months old. It just so happened that Lisa is the same age Jenifer was when we first met her and she looks just like her, except more chubby. Fortunately Lisa does not have any heart disease.

I gave Jenifer four colourful hairclips and she chose another for her baby sister, as a reminder for mum if not her girls about the white man who came to visit.

As for the rest of our day? Well, that’s another story…

jennifer

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