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Managing HomePN in Malaysia
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 Nishah Devi Govindarajanthran

               My pregnancy was supposed to be just like everyone else’s—crazy cravings, cute belly, and kicks from inside to remind me a little addition can’t wait to join our tiny incomplete family. Such a naïve first-time mommy I was. It began to feel more real when I was diagnosed with pre-eclampsia at the twenty-fifth week and was put on bed rest in the hospital from the twenty-eighth to thirty-second week.


 
   Nishah learned good hand washing technique in hospital.

               I was reminded day after day of the complications of prematurity. Heart, lungs, eyes, ears, delayed development, and weight issues were all mentioned, but bowel obstruction was not. My little (literally) Jai was born in January 2016 via emergency C-section in the thirty-second week at a “whopping” 1.19 kilograms [roughly 2 pounds, 10 ounces] with no lung issues. Doctors technically categorized him as a big boy in the sea of 500 gram babies [equivalent to approximately 18 ounces] in the NICU. We were waiting for his weight to increase and to take him home, like most families do.


Early Complications 

               Unfortunately, on the tenth day of his life, Jai’s heart rate increased, his O2 levels decreased, and his tummy was severely distended. We got the dreaded call from the hospital (I absolutely hate this feeling, even writing this brings painful tears to my eyes). Our doctors sat us down to say something wasn’t right and they suspected necrotizing enterocolitis (NEC) was the culprit. We gave the green light for Jai to go in for an emergency surgery.


               We waited and the doctor came out halfway to update us. She told us he did not have NEC! Hooray! Nope, not hooray at all. Jai had a condition called midgut volvulus and it was almost unheard of in a premature baby in Malaysia. We did not have any statistics to fall back on, no data to assure us.


               The following days and three surgeries later, we found out that Jai was left with all his large intestines, but only 8 cm of his small bowel was saved. Survival was unheard of in this part of the world and we had the term “not normal” thrown at us every single day. I felt great anger toward doctors, including my own brother, who is a vascular surgeon, because of the comments and predictions made.


               My husband said, “This is our new normal.” That’s when we heard the term “PN [parenteral nutrition] dependent.” The following months were tough. I was asked to room in permanently with Jai in the hospital to care for his needs. I loved being so close to him, but I hated the idea of living in the hospital.


Finding Hope

               We started researching and sharing our story in hopes of HOPE. The Short Gut Syndrome Families’ Support Group* on Facebook opened our eyes to the possibilities of home PN, of scrubbing in ourselves, central venous access device and line care, and a clean home environment. The daily encouragement given was amazing! Home PN is very rare in our country, especially for children. There were only two cases recorded and these children were at least two years old before home PN was initiated.


               I quit my day job, started assisting and learning methods from various nurses, and eventually started connecting PN for Jai in the hospital myself. PN is completely subsidized by our government, however, dressing sets, Tegaderm™ dressings, syringes, and saline flushes are not. We needed to financially cover these ourselves, even the infusion pumps! We decided to take the bold step with help from our families, and we prepared Jai’s room.


               The conditions of his discharge were that we have a room solely for Jai, with no carpet on the floor; sufficient power supply points; a stainless steel trolley; a mini fridge solely for PN and medications; a drip stand; a bathroom and sink attached to the room; a medication cabinet equipped with disposable sterile dressing sets, disposable gloves, disposable syringes, normal saline flushes, heparin flushes, and alcohol swabs; and a big garbage bin to hold all the disposable items after use. DONE!


 
                    Jai, happy to be home at last. 

              The next step was to convince our doctors and senior nurses that my husband and I were equipped mentally to manage Jai’s line with the procedures in hand. We are not in the medical field and putting on sterile gloves the STERILE way was no fun and challenging. Eventually we got the hang of it. We had three “auditions,” which we passed with flying colors, despite the nerve-wracking moments.


Home, Sweet Home 

               In September 2016, the day came to finally bring Jai home. He is home on PN, but he is home. He was nine months old, making him the youngest in the country to be on home PN. We do not know how long he will be PN dependent, but we are very grateful for this option.


               Jai lives the life of a pre-toddler ordinarily, but hooked up to PN sixteen hours a day extraordinarily. We are thankful for the global support that has given us a voice and the confidence to make a change. Thank you, from a clueless mother rising to the occasion!


*Group created in 2011 by Oley Ambassador Emily Hoopes, who is still very active with the group and acts as one of the group’s administrators. Emily says, “When I created this Facebook group, I imagined a small local group. Instead, I quickly met about fifty other moms like me and patients from around the world looking for help and willing to help each other. Those founding members are still actively involved, and they have been joined by others, all of whom watch out for and care for each other.”


LifelineLetter, January/February 2017

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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