“My little girl can’t swallow”

Jasmine Lee’s world came crashing down when her baby was born with several serious health issues, including problems swallowing.

“My little girl can’t swallow”


“I delivered Sarah via an elective Caesarean at 38 weeks on the advice of my doctor who, after examining my baby, said she wasn’t gaining any weight in the womb. I wasn’t overly worried as my prenatal scans hadn’t detected anything out of the ordinary. My concern then was for the doctor to beef up her weight, post-delivery.

Days before the op at Thomson Medical Centre, my husband contracted hand, foot and mouth disease from our elder son, Jovan, then 1½ years. As he was unable to accompany me to the hospital, we had to communicate through a webcam.

After Sarah was born, the doctors said that she had a small receding chin and her cries were soft and husky (stridor or noisy breathing). I managed to hold my newborn briefly before she was whisked away to the intensive care unit (ICU) to be examined by an ear, nose and throat specialist. While there, doctors cleared her blocked airways of phlegm — they also told me she’d be all right after that.

The next day, the paediatrician said that Sarah couldn’t tolerate her milk feeds, nor was she sucking properly. That evening, my baby was transferred to the high-dependency ward at KK Women’s and Children’s Hospital where we were told that she has nerve palsy on the left side of her face.

It grieved us to see our baby’s tiny body attached to all sorts of wires and tubes. My heart broke to see Sarah getting milk through the nose via a nasogastric tube that went into the stomach. The doctors also scanned her brain and tested her airways. They told us that Sarah couldn’t swallow because of her small receding chin and the abnormal positioning of her voice box, which further narrowed her airways. It’s why she produces excess secretions, which require frequent suctioning to clear her mouth and nose. An ultrasound scan of her heart also showed a tiny hole, though that closed eventually.

On realising that our little girl has special needs that require specific medical attention, we Googled her conditions and consulted other specialists. During Sarah’s first month in the high-dependency ward, there were many episodes where her oxygen level would drop to below 95 per cent — when it’s normally 95 to 100 per cent. At times, she even turned blue and doctors had to revive her by bagging her. To help Sarah breathe better, the doctors suggested a tracheostomy procedure. My husband and I didn’t think twice — Sarah was a little over a month old when she had the tracheostomy operation.

Photo: INGimage

 

Before we could bring our baby home, we had to learn the right skills to care for her, such as how to perform suctioning, do the tube changes, and how to administer medicine, among others. After two-and-a-half months in the hospital, Sarah finally came home. I eventually quit my job to take care of my children.

Sarah spent her first year of life in and out of hospital as the “trach” made her more prone to various respiratory illnesses. At first, her brother Jovan would fight for attention and wondered why he couldn’t play with mei mei. So, we had to explain why he’s not supposed to tug at her tubes.

When Sarah was almost 2 in April 2014, another scan showed that her brain stem was smaller than a normal child’s. Every six to nine months, Sarah has to be tested to check if the inflammations caused by the tracheostomy tube might obstruct her airways.

Now that she is 3, Sarah still can’t sit up on her own and has moderate hearing loss, is short-sighted and her joints are stiff. Every month, she receives home-based therapy where therapists provide speech-language therapy, and occupational, as well as physical therapy, to help stimulate her mind and body.

Early this year, Sarah underwent a four-hour-long surgical procedure to prevent her stomach contents from returning to the oesophagus as she also suffers from gastroesophageal reflux disease. We also wanted to free her from tube-feeding, so, the gastrostomy surgery — a surgical opening into the stomach — now allows Sarah to be fed though a “button” on the abdomen.

We continue to be baffled over why our little girl is suffering all these conditions. Nor does there seem to be a diagnosis, since her symptoms do not fall under a particular syndrome or disease. All we know is that she has a rare disorder.

 

Caring for a toddler and an infant with a tracheostomy is both challenging and exhausting. When we go out with Sarah, we have to bring along her suctioning machine, a pulse oximeter that monitors her oxygen level, plus have an oxygen tank on standby. But we’ve learnt to cope. Sometimes, we’ll bring the kids out for meals or go for a short coffee break with Sarah after dropping Jovan off at his grandparents’ place.

It has been an emotional roller-coaster ride, but I draw my strength from my husband who is always there for us. While I can’t deny that I’ve compared Sarah to my elder son when it comes to hitting milestones, over time I’ve realised that I don’t need my daughter to hit any normal milestones — what little things she can accomplish are her milestones.”

Jasmine Lee, 30, lives in Bukit Panjang with her husband Sylvester, 32, daughter Sarah, 3, and son, Jovan, 4.

This story was first published in the July 2015 issue of Mother & Baby Singapore.

Tracheostomy — the facts
Dr Foo Toon Hiong, an ear, nose and throat specialist at Raffles ENT Centre, sheds light on tracheostomies.

WHAT IS A TRACHEOSTOMY? This surgical procedure at the front of the neck creates an opening in the upper windpipe (trachea) and below the voice box (larynx). The synthetic tube that’s placed at the opening in the neck is made of polyvinyl chloride (PVC), silicone or metallic silver.

WHY IS A TRACHEOSTOMY NECESSARY? To help the patient breathe well, especially if the patient’s airway is severely obstructed, either by a tumour, congenital abnormalities of the voice box, severe acute epiglottitis (the flap that covers the trachea) or trauma to the face and mouth.

HOW DOES ONE CARE OR AN INFANT WITH A TRACHEOSTOMY? Hospital experts will educate caregivers before discharging the infant from hospital. Each careful caregiver must know how to safely remove and replace this artificial device. To reduce infections, one must adhere to proper hygiene and sterile processes. The tube needs to be suctioned regularly (via a suction machine) to clear any mucus plugs blocking it.

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