Our miracle Timorese baby
November 20, 2011
When doctors at Canberra Hospital first saw four-day-old Santa Madalena Rebelo from East Timor, her belly was covered with glad wrap in an attempt to keep her intestines from spilling out of her body.
The baby was born with gastroschisis, a birth defect in which organs protrude from the body through a defect on one side of the umbilical cord.
In Australia, more than 95per cent of babies born with gastroschisis survive, but in East Timor her mother, Maria Rebelo, was told that her baby would have a very small chance of surviving.
A happy David Croaker, Sandra Mahlberg with Santa and mother Maria.
The baby was admitted to the Neonatal ward in Dili and seen by specialists.
Australian paediatrician Ingrid Bucens, working in Dili, who has referred patients previously to ROMAC suggested to the 33 year old mother that there was a possibility that treatment in Australia could give her baby the best possible chance of survival.
Desperately wanting her baby to live, later that day Dr Bucens contacted ROMAC who started the process of referral and transfer of baby Santa to Australia.
Paediatric surgeon Assoc/Professor David Croaker accepted care and The Canberra Hospital agreed to treat the little girl under a partnership agreement with ROMAC which helps children from developing countries afflicted with severe medical conditions.
Time was a critical factor, with the risk of infection growing every minute.
Immigration officials rushed through a medical treatment visa within 24 hours, allowing mother and daughter to fly to Darwin and on to Canberra for the life-saving surgery. Mrs Rebelo said doctors in Dili couldn't do the operation because they said the baby won't live for more than four days and also the equipment and everything is not good at Dili Hospital.
Santa arrived at Canberra Hospital four days after she was born - but she was dying.
Professor Croaker said more than 100cm of the little girls' intestines and one ovary were outside the abdominal cavity. Santa was rushed to theatre where a silo was inserted in the cavity sealing off the bowel to prevent any further infection from the protruding bowel. This silo was hung up holding the bowel outside the abdominal wall until it was possible to slowly reduce it back into the small abdominal opening.
Santa had much bigger problems though; she now had an infection that the intensivists told us she had little chance of survival even with triple antibiotics. Santa was baptised that same evening. The first 24 hours of the best medical care and prayer was crucial, Santa remained the same.
The next 48 hours followed, Santa remained very sick but was holding her own. Each day was a blessing and a good day. Once the imminent emergency was over the doctors then began to reduce the silo with a gentle squeeze of the bowel back into the abdomen each day. After two weeks the bowel was reduced sufficiently to actually operate and close the abdominal wall.
The longer the bowel was outside the abdomen the greater the infection risk. We were still not over the seriousness of her condition. The abdomen was swollen, the bowel needed to start working, this was going to take some time. Gradually the doctors reduced the sedation and Santa began to wake up and respond to her surroundings.
Santa was extubated, breathing on her own with oxygen therapy only. Central lines remained feeding her nutrients, blood products, antibiotics and fluids. Gradually the bowel started to work. Santa was now 4 weeks old and remained in NICCU the whole time.
She was then transferred to the high dependency paediatric ward with the slow introduction to expressed breast milk, Santa continually vomited afterwards. A change to formula bottle feeds was necessary with a gradual increase in volume and a reduction of parental feeding. Baby Santa had her bowels open but there was another concern. A small opening occurred near the abdomen wound closure,
it became evident that faecal bowel matter was present.
A colostomy bag was placed on to prevent cross infection to the abdominal wound. A small bowel protrusion increased this being a fistular and will need to be closed in the next two weeks once Santa had accepted total bottle feeds.
Santa is gaining weight and is over 3.5kgs (arriving 2.2kgs) a bouncy baby, demanding cuddles and feeds. The medical and nursing staff both in NICCU and paediatric ward have been fantastic, very supportive. Maria is so thrilled to know her baby will survive and should be going home soon after Christmas.
A happy Maria shows off a healthier Santa.
The support for Maria from the Timor Leste Embassy has been wonderful. A network of 4 families has provided interpreting services, meals, emotional support and friendship at a much needed and scary time for Maria.
To be a part of a great team to save baby Santa is a wonderful experience. So many involved, so many who have cared for one little special baby.
January 13, 2012
Following her return to East Timor, after successful treatment of her gastroschisis, Santa tragically died in early January, from an unrelated illness. Our thoughts are with her family, and with those who treated and cared for her during hospitalization in Canberra.
