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WHAT EXACTLY IS DIAPHRAGMATIC HERNIA?
A diaphragmatic hernia (Congenital Diaphragmatic Hernia = CDH) is a congenital defect or hole in the diaphragm which is produced by the failure of the diaphragm to fuse properly during fetal development. The majority of CDHs occur on the left side, allowing the stomach, intestine and other abdominal organs respectively to migrate up into the chest cavity. The bigger the hole in the diaphragm is, the more abdominal organs will find their way into the chest cavity. This results in the compression of the unborn child’s lungs which stops the lungs from developing properly. More recent resarch shows that CDH does not only affect the lungs’ growth, but also its overall functioning. Approximately every second newborn with CDH shows additional malformations. Congenital Diaphragmatic Hernia occurs in 1 in 3,000 to 1 in 4,000 births.
This defect is diagnosed in utero by ultrasound scan in the course of the recommended regular medical checkups during pregnancy. Further specific examinations (fetal MRI etc.) can define the severity of the CDH. The early diagnosis and the planning of the ideal delivery at a perinatal center do have a significant influence on the survival of the child with CDH and the prognosis they will face. With maximum therapy the survival rate has increased to 70-90%.
Despite of the ever improving medical care and technology this congenital malformation might not always be discovered during pregnancy. Because of the fact that these babies normally will have severe breathing difficulties right after they are born, they will, on the latest, be diagnosed a few hours after their birth.
Almost all newborns with CDH need intensive medical care. The treatment involves artificial respiration, artificial nutrition via a tube or intravenous infusions, intensive monitoring, urinary catheterization and many more. In particular cases even extra corporeal membrane oxigenation (ECMO) is necessary.
During the past decades, a surgical correction of the CDH after a preoperative stabilization phase of several days has prooved to be most reasonable. In this surgery both diaphragmatic cruras are joined or the hole is sewn closed using a patch (synthetic piece e. g. of Goretex) in order to close the hole properly.
WHY ARE THESE CHILDREN ALSO TUBE FED?
When the respiration is stable and the child is recovering from the surgery, the child often remains for a few weeks up to months at the intensive care unit. As long as these children depend on artificial respiration, they do need artificial nutrition via a tube or intravenous infusions in order to make sure the child receives a sufficient amount and the optimum of nutrients during this exhausting first critical phase of life.
For this reason the first months of life are literally quite “intensive” for many children and their families. In order for the child to get maximum support in surviving, it is necessary for the child to receive intensive medical care right after the child is born. Ideally the parents get the chance to see their baby as soon as possible, even though the baby might already be supported by several tubes. One tube is placed in the trachea, another tube in the stomach, there might even be a catheter located in the belly button and the baby will be monitored by several sensors attached to their skin.
Depending on how severe the child’s condition is, there will be big worry about the survival of the child. All these intensive care measures need to be taken urgently, if one wants to save the lives of these children.
AND WHAT ELSE MIGHT HAPPEN?
Unfortunately every treatment which brings positive effects will also cause side effects. During this treatment phase the child and the parents go through many mental and physical traumata. The child has to endure measures he/she doesn’t want to be subject to and above all, doesn’t understand. These children suffer numerous oral traumata (repeated intubation, artificial respiration, suctions, tube placement, examinations, etc.) which might lead to oral hypersensitivity, anxiety and an active aversive behavior. Restricted visiting hours, scheduled surgeries, taking vital decisions for their child, caring for the siblings of the sick child make the parents got through stress and are a heavy burden to them.
This phase at the intensive care unit is followed by a phase of stabilization at a normal hospital ward and later on at home. Often the children still do need continued respiratory support during the stabilization phase. The normal development of sucking and swallowing skills was disturbed in the first phase which creates a prolonged need for partial or full enteral nutrition via a feeding tube (NG- or G-tube). In addition, if needed, a medical monitor will be used and is only one of many support measures which might be taken.
In the course of the following months several support measures can be reduced slowly. But what about the feeding tube? There are children who succeed in making the transition from enteral to autonomous oral feeding step by step if an ideal environment for making this development is given but there are children who are not able to achieve this transition that easily.
WHY DOES A CHILD GET “STUCK” ON THE TUBE?
As already mentioned, all these children experienced massive oral traumata. In addition, there is an increased anatomical risk of gastroesophageal reflux disease (GERD). Due to the long time of being administered sedatives (respectively relaxants) these children experience a muscle weakness of the whole musculoskeletal system, including, of course, the masticatory and swallowing apparatus. Desperate feeding attempts by the medical team and the parents (including force feeding) cause aversive behaviour and resistance in the child. Furthermore children on total enteral nutrition suffer from nausea, vomiting and constantly feel stuffed. Often these children are little fighters with a strong will and a big need for a high level of self-determination. For this reason and taking into account the high number of known and certainly also yet unknown causes, it is indeed understandable that these children struggle with “simply” lerning to eat.
Therefore tube dependency is often just one of the last problems in a long list of complications and challenges these children already had to cope with. Nevertheless tube dependency is, in many cases, the reason why the daily lives of families is limited and dictated by the medical needs of their sick child. Kindergardens might refuse to admit tube fed children. If the family visits a restaurant or cafè with the child whose tube is coming out of their nose or their belly everyone will stare at them. The tube feeding equipment is heavy, one needs extension tubing, feeding pump, formula and all this makes any holiday not feel like one anymore. Furthermore these children show lots of side effects of tube feeding like vomiting, painful retching, aswell as failure to thrive despite of enteral nutrition, just to mention the most common ones.
You can get rid of all these problems by tube weaning. The child will learn how to overcome their fear of eating. After a successful tube weaning the parents will see that their child has turned into a “normal” child and their child’s discomforts will be gone. To many children and their parents it will be like a miracle, just as intensive care medicine had been to them. But this time they will be a lot more involved in the miracle which will be marked joyful moments, but also by fear and eventually will lead them to success.
In the last years the NoTube team has been able to successfully tube wean 18 children with Congenital Diaphragmatic Hernia (11 girls and 7 boys). For this group the success rate is 100% so far.
Here at NoTube we have seen lives transformed by tube weaning with a good, supportive team, and hope to be able to help many more families in the future.
Warm thanks to Dr. Elisabeth Beckenbach, our co-writer.