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What to expect
 Our experience of the condition is likely to differ from other babies with the condition. We have read various articles and become aware of other peoples stories over the past two years. Imogen was a severe case and very lucky to survive, let this be some hope to you if you have had your unborn baby diagnosed with a hernia. Whilst it is reasonably rare, (statistics are difficult find an exact amount, but approx 1/2000) whilst in St. Mary’s, we encountered 4 other cases. We are so glad to report that all the babies went home with Mum and Dad. Of all the cases, each baby was operated on much earlier in life than Imogen and all left without the need for oxygen or further complications.

Imogen left hospital still requiring oxygen 24/7. This may appear daunting at first or even inconvenient, but it is a small price to pay to have her home. In all honesty, it is no problem to us and it is second nature when going out. You may find if your baby comes home on oxygen that people will sympathise. Please don’t let oxygen worry you. At home we have a concentrator that hums away in the hall with a long lead that enables access all over the house. We are now seeing Imogen become independently mobile and occasionally gets snagged on a chair leg, but she soon knows about it and retraces her tracks.

 
  

Outdoor journeys require us to take portable cylinders which are about 20” tall and once in a suitable backpack or under the pram are barely noticeable. Oxygen is available on prescription, with us using 2-3 cylinders per week. This is delivered by the specialist oxygen company at reasonably short notice. We also have large standby cylinders for use in case of power failure.

Imogen also requires nebulisers twice a day which are also run by the cylinder. The nebuliser is similar to what an asthma sufferer would inhale from a puffer. However, this is in a solution that is in a pot connected to the cylinder and by high pressure flow of oxygen is vapourised. This is held under her nose for a few minutes and helps clear her lungs.

 
  

Another area which DH babies can struggle is with feeding and weight gain. During all her time in hospital, she was on permanent pump feed by nasal gastric tube. This is a feeding tube that goes up her nose to the stomach. Imogen did eventually begin taking small amounts by bottle, but never enough to sustain herself. Her feed was a high calorie specialist milk that helped with weight gain. However, after being home for a month or so, she took a backward step and went off oral feeding. To this day, she is still on the pump feed and showing some small progress in eating orally. We find that being on the feeding pump is more problematic than the oxygen. Every so often, Imogen can vomit it up, snag it by accident or it can get blocked. To reinsert it is a horrible procedure that causes a lot of distress to Imogen. It’s our worst nightmare when it comes out. Imagine having one thread up your nose and down your throat!!