Help Baby Jayden

Little Jayden Huynh had a dramatic start to life. When his mother, Emily, was only nineteen weeks pregnant, the family learned that their little boy wasn’t growing properly. A few weeks later, the family went through the first major earthquake in Christchurch, New Zealand, a 7.1 magnitude shake.

By twenty-eight weeks, Jayden had stopped growing altogether. At thirty-five weeks, he was delivered by cesarean section after all losing all his amniotic fluid and not moving for twenty-four hours. Although he appeared far healthier at birth than anyone was expecting, that soon changed. By the time he was eight weeks old, Jayden (still in NICU) had gone through three emergency surgeries. The first was when he was only 24 hours old, to repair a perforated and septic bowel, another (after a bowel infection and pneumonia) to repair an artery in his heart that hadn’t closed (a P.D.A), and then a second bowel operation to remove most of the rest of his bowel and give him an ileostomy (a stoma). The doctors discovered that he had a very rare variant of Hirschsprung’s disease, but that wasn’t the cause of all his problems.

In June, after going through eight thousand earthquake aftershocks, including the quake on February 22nd that took 182 lives, the family decided to relocate to Victor’s (his dad) homeland—Australia. Jayden had begun having seizures, and would stop breathing during these. They needed to be somewhere where the hospital services were less likely to be interrupted and where they could ease some of the stress from the constant shaking.

Jayden’s biggest issue since then has been complications due to not gaining weight. He has never gained weight normally since before he was born. Nothing the doctors have tried has worked. He’s had naso-gastric tubes, naso-jejunum tubes, a g-tube, various formulas and additives, and nothing has worked. The staff at Royal Children’s Hospital in Melbourne have been incredible and left no stone unturned in trying to find out why this is happening to Jayden, but some puzzles are not meant to be solved, it seems.

Now, Jayden’s organs are beginning to struggle under the strain of such low body weight. At seventeen-months-old, he weighs only 6.5 kilograms (almost a kilogram less than his little brother, Grayson, who is a full year younger). His bilirubin levels are high and his organs have already had too much to deal with. He has been admitted into hospital again (after only three weeks home after a three-month stay—with small breaks at home). This time, he’s there to be considered for TPN feeding, or Total Parenteral Feeding. All his calories will be supplied through a permanent IV port under his clavicle. There is a high risk of sepsis at the IV site as the IV has to be inserted at home every night, and Jayden has very little reserves to fight any infection now. There is also the risk of organ damage, which is higher than usual for Jayden as his liver is already struggling and due to his Asian (Vietnamese/Chinese/European) descent.

His family (including Grandma who lives with the family to help with the enormous amount of work involved in caring for a little boy with chronic vomiting, a stoma bag, a g-tube and soon, the complicated procedure involved in TPN feeding), need to find a new place to live before he is discharged on TPN. When they moved to Australia, they needed to take the first house available, and the cramped flat doesn’t provide a space that can be kept sterile to administer Jayden’s daily treatments. So, Help Baby Jayden has been created to help support the family, to help with the huge financial pressure that comes from caring for a chronically ill child, and to brighten their lives in any way possible.

It will soon be possible to donate or join in the fundraising efforts to help Jayden and his family. In the meantime, if you wish to help, please email helpbabyjayden@gmail.com for details on how to do this. Thank you so much for your support, every prayer, good wish, and penny counts. The Huynh family is grateful for it all and believe the good thoughts and prayers of family and friends so far have helped pull Jayden through one crisis after another.

Thank you.