Gidion's story
I had a perfect pregnancy – no nausea, no significant heartburn and only a small
bump. But at 32 weeks pregnancy, my gynaecologist told us that she couldn’t see
our baby’s stomach on the sonar and that we had to go for an emergency foetal
assessment. After the assessment we were told to expect that something is wrong
with our baby’s oesophagus (food pipe), because he wasn’t able to swallow the
amniotic fluid. Also, we had to expect a high probability of genetic defects.
On 27 December 2008, our angel Gidion Reuben decided that he wasn’t patient enough
(already have mom characteristics!) to wait until 6 February 2009 to meet his mom and dad. He was born with the scale “groaning” at 1.3kg. We only had a few seconds each to hold our son, before he was whisked off to Neonatal ICU (NICU) where he was connected to tubes to prevent him from choking. He was diagnosed with a Tracheal Oesophageal Fistule (TOF) with Oesophageal Atresia (OA), which basically meant that his food pipe ended blindly and not in his stomach. And so our journey began…
The night before surgery was scheduled, one of the angels of NICU allowed me to
kangaroo Gidion (since he had so many pipes connected to him that was his lifeline, I wasn’t really allowed to hold him). It would be the last time I got to hold my baby for the next 7 weeks. On Monday 29 December, Gidion was taken to theatre for surgery. It was the longest and most terrible 4 hours of our lives.
After ~4 weeks in NICU and several complications, a geneticist told us that the genetic tests came back, and that Gidion had Fanconi Anemia (FA) (see page for infomation). Gidion was in NICU for 60 days before he was discharged at a weight of 2.2kg. He was on the ventilator for 7 weeks, where his lungs were just not strong enough for him to breath on his own. Although everyone told us to expect permanent damage due to the long period of ventilation, we knew that the Lord was keeping him safe in
His hands. And praise the Lord, there was none.
In NICU, Gidion was drinking small volumes from the breast, while the rest of the
milk was given via a nasogastric tube (a tube that is inserted through the nostril and extends into the stomach). I was taught how to pass the tube, since he was discharged with it, and I had to know how to reinsert it if he should pull it out (which he did the 1st night he was home! Mom nearly had a heart attack). At home, he struggled to drink large volumes from the breast, and refused to take a bottle or even a pacifier. Only later would I hear that he developed something called an oral aversion. Our whole lives turned around. I couldn’t go back to work full-time, since I wasn’t able to teach someone how to tube feed Gidion. The caregivers who knew how to do it, was simply just too expensive. I had to give Gidion his milk every 3 hours, which meant that I had to schedule my work between feeds. I thought the moment we could start introducing solids, that everything would start to come right. But Gidion would scream in fear the moment we brought food close to his mouth. So on we went with the 3 hourly feeds…
Up to date, Gidion still has his nasogastric tube. Our angel from NICU comes every week to reinsert the tube, since I’m not able to do it alone any more. It is very traumatic for Gidion, and he starts crying heartbreakingly from the moment we remove the old tube until the new tube is inserted. Most of the time he cries so hard, that she struggles to pass the tube. He starts to cough and gag and brings the tube back up through his mouth. Neither I nor Gidion can take this for much longer.
Gidion has developed a psychological and physical dependency on the tube and has never learned how to associate food/milk with hunger. He currently weighs 6.3kg, the weight of a healthy 3 month old baby (and he is almost 9 months old). He has started to try to eat a bit of food, but it takes more that an hour to get ½ teaspoon into his mouth. Also, the moment the food touches his tongue, he gags and vomits, just reinforcing his idea that food causes pain. The doctors are starting to suggest that we should insert a gastrostomy (tube directly into the stomach), which in South Africa is considered as a long term option and a “lifestyle” that he needs to adapt to. We refuse to do that, since our son CAN eat and swallow, he just needs to loose his fear of eating and drinking. We will not allow our son to go through surgery again. I praise the Lord that Sheona and Barry, and their son Finn came across our way. Her son had similar (even worse) problems compared to Gidion, and is now able to eat and drink! She told us about the Medical University of Graz in Austria (www.notube.at) who specialises in a tube weaning program. Up to date, every child that has been admitted to this hospital has learned to eat, despite the problem they had. It is a 3-5 week program, the period depending on how severe the problem is.
I decided that we will do whatever it takes to take Gidion for treatment in Graz as soon as possible, because we can’t stand to see Gidion vomiting with every feed and loosing weight. We also never want to see Gidion going through another Staphylococcus infection again. It is time that Gidion has a good quality of life and has a sense of normalcy. Unfortunately the costs are way above our means. We are therefore trying to
raise funds as fast as possible in order to help Gidion. If anyone can please find it in their hearts to help us with a donation of even ideas on fund raising, we will be so grateful. The funds will be used for transport to Graz (flight tickets for my husband and I, and
Gidion, to Graz), institute costs, accommodation, expenses for Gidion (e.g. formula milk, nappies etc. since we cannot take 3 week’s supply with us) and meals.
Tuschka du Toit: 082 454 3123
bump. But at 32 weeks pregnancy, my gynaecologist told us that she couldn’t see
our baby’s stomach on the sonar and that we had to go for an emergency foetal
assessment. After the assessment we were told to expect that something is wrong
with our baby’s oesophagus (food pipe), because he wasn’t able to swallow the
amniotic fluid. Also, we had to expect a high probability of genetic defects.
On 27 December 2008, our angel Gidion Reuben decided that he wasn’t patient enough
(already have mom characteristics!) to wait until 6 February 2009 to meet his mom and dad. He was born with the scale “groaning” at 1.3kg. We only had a few seconds each to hold our son, before he was whisked off to Neonatal ICU (NICU) where he was connected to tubes to prevent him from choking. He was diagnosed with a Tracheal Oesophageal Fistule (TOF) with Oesophageal Atresia (OA), which basically meant that his food pipe ended blindly and not in his stomach. And so our journey began…
The night before surgery was scheduled, one of the angels of NICU allowed me to
kangaroo Gidion (since he had so many pipes connected to him that was his lifeline, I wasn’t really allowed to hold him). It would be the last time I got to hold my baby for the next 7 weeks. On Monday 29 December, Gidion was taken to theatre for surgery. It was the longest and most terrible 4 hours of our lives.
After ~4 weeks in NICU and several complications, a geneticist told us that the genetic tests came back, and that Gidion had Fanconi Anemia (FA) (see page for infomation). Gidion was in NICU for 60 days before he was discharged at a weight of 2.2kg. He was on the ventilator for 7 weeks, where his lungs were just not strong enough for him to breath on his own. Although everyone told us to expect permanent damage due to the long period of ventilation, we knew that the Lord was keeping him safe in
His hands. And praise the Lord, there was none.
In NICU, Gidion was drinking small volumes from the breast, while the rest of the
milk was given via a nasogastric tube (a tube that is inserted through the nostril and extends into the stomach). I was taught how to pass the tube, since he was discharged with it, and I had to know how to reinsert it if he should pull it out (which he did the 1st night he was home! Mom nearly had a heart attack). At home, he struggled to drink large volumes from the breast, and refused to take a bottle or even a pacifier. Only later would I hear that he developed something called an oral aversion. Our whole lives turned around. I couldn’t go back to work full-time, since I wasn’t able to teach someone how to tube feed Gidion. The caregivers who knew how to do it, was simply just too expensive. I had to give Gidion his milk every 3 hours, which meant that I had to schedule my work between feeds. I thought the moment we could start introducing solids, that everything would start to come right. But Gidion would scream in fear the moment we brought food close to his mouth. So on we went with the 3 hourly feeds…
Up to date, Gidion still has his nasogastric tube. Our angel from NICU comes every week to reinsert the tube, since I’m not able to do it alone any more. It is very traumatic for Gidion, and he starts crying heartbreakingly from the moment we remove the old tube until the new tube is inserted. Most of the time he cries so hard, that she struggles to pass the tube. He starts to cough and gag and brings the tube back up through his mouth. Neither I nor Gidion can take this for much longer.
Gidion has developed a psychological and physical dependency on the tube and has never learned how to associate food/milk with hunger. He currently weighs 6.3kg, the weight of a healthy 3 month old baby (and he is almost 9 months old). He has started to try to eat a bit of food, but it takes more that an hour to get ½ teaspoon into his mouth. Also, the moment the food touches his tongue, he gags and vomits, just reinforcing his idea that food causes pain. The doctors are starting to suggest that we should insert a gastrostomy (tube directly into the stomach), which in South Africa is considered as a long term option and a “lifestyle” that he needs to adapt to. We refuse to do that, since our son CAN eat and swallow, he just needs to loose his fear of eating and drinking. We will not allow our son to go through surgery again. I praise the Lord that Sheona and Barry, and their son Finn came across our way. Her son had similar (even worse) problems compared to Gidion, and is now able to eat and drink! She told us about the Medical University of Graz in Austria (www.notube.at) who specialises in a tube weaning program. Up to date, every child that has been admitted to this hospital has learned to eat, despite the problem they had. It is a 3-5 week program, the period depending on how severe the problem is.
I decided that we will do whatever it takes to take Gidion for treatment in Graz as soon as possible, because we can’t stand to see Gidion vomiting with every feed and loosing weight. We also never want to see Gidion going through another Staphylococcus infection again. It is time that Gidion has a good quality of life and has a sense of normalcy. Unfortunately the costs are way above our means. We are therefore trying to
raise funds as fast as possible in order to help Gidion. If anyone can please find it in their hearts to help us with a donation of even ideas on fund raising, we will be so grateful. The funds will be used for transport to Graz (flight tickets for my husband and I, and
Gidion, to Graz), institute costs, accommodation, expenses for Gidion (e.g. formula milk, nappies etc. since we cannot take 3 week’s supply with us) and meals.
Tuschka du Toit: 082 454 3123