Family of heart surgery boy in constant anguish over condition

‘…now he can’t even sit down or lift his head’
Three-year-old Udesh Ragubar of Edinburgh, East Bank Berbice had an open heart surgery performed at the Caribbean Heart Institute in Georgetown and his mother was relieved, thinking that his troubles would be over.

Urrmela Luckhoo, 29, told Stabroek News that her biggest dream was for her son to have a normal life but instead, six months after the surgery, on April 12 it is far from normal.

Udesh was diagnosed with an enlarged right ventricle as well as a dilated right atrium and right ventricle and experienced trouble breathing.

Udesh Ragubar

And before the surgery he was “walking and talking but now he can’t even sit down or lift his head,” his mother said. He has also become blind and suffers from seizures and constipation.  She said he is unable to eat and she has to “pour the porridge down his throat.”

Besides, his mother said, it breaks her heart because he keeps crying almost “non-stop. He does wake up most of the night and cry” and she does not know what to do to ease his discomfort.

The distressed mother said her only hope now for her son to get back on his feet is for an assessment by a neurologist and possibly corrective surgery overseas.

She is appealing for help to make the surgery possible. “I don’t know what happened; everything on him just shut down.”
He has been attending paediatric clinic at the Georgetown Public Hospital and although the doctor gave him medication he is still unable to sleep throughout the night. His constant crying disturbs his three older siblings as well as the neighbours.

Because she is losing her rest all night, Urmela finds it difficult to get up at 3 am to cook for her husband, a labourer at the sugar estate, to go to work. Luckily, he helps her out with the cooking.

This newspaper had spoken to the mother just after the surgery and she said he was up and playing, eating and responding to the things and people around him.

But that only lasted for four days. After that Udesh started to become unresponsive. He would just lie there and stare off into space. He was not speaking or moving much.

She had said that after this was observed for some days, the child was given a “head scan” and doctors told her that he had swelling and “damage” in the brain. She spent two months at the CHI with him.

The woman recounted that about the fifth day after the surgery, Udesh apparently developed a “lung problem” and drifted into a coma; he kept sleeping all the time for about one week. When he revived he was just staring upwards.

Ragubar was among seven children who had undergone open heart surgery at the CHI. That was the first time the paediatric surgeries were performed in Guyana.

Stabroek News had highlighted Luckhoo and her husband’s frantic attempt to raise funds to take their son overseas for surgery.
President of the New Jersery Arya Samaj Mandir, Suresh Sugrim was also trying to assist the boy to have the surgery done in Canada.

In the process of waiting, US-based Guyanese George Subhraj contacted the family and informed that the surgery could be done locally and Urmela was elated at the  news.

Subhraj was the largest contributor in the government/private sector venture, which was estimated to cost about US$50,000.
In the meantime, Urmela had raised $500,000 locally to take the child for the surgery overseas.

She told this newspaper recently that she has almost exhausted that sum and was “caring” the little she has left to “look after Udesh.”
She said it costs her a lot to take him to the doctor and to purchase disposable diapers, medication and nourishment for him.

The Ministry of Health had provided US$9,000 to help with the surgery and after it was not successful she went back to the ministry for assistance.
She was told that she would have to write to President Bharrat Jagdeo and Cabinet Secretary, Dr. Roger Luncheon for an appointment. She has not heard from them as yet.