Raphael's growth

The "R" in CHARGE - Retardation of growth

The following are the details of what we know about Raphael's growth.

Medical Information
Raphael's notable growth and development issues consist of the following:

1. Diagnosed with Failure To Thrive (FTT) on 30/11/2006.
2. Endocrinologist is happy with growth and does not think that growth hormones is a good idea for Raphael, but would like to have a thyroid blood test done.
3. "Significant gastro-oesophageal reflux" (barium swallow report 17/5/2006).
4. Excessive pharyngeal milk and secretion residue. (ENT 11/5/2006). Contrast pooling was also noted in the barium swallow report of 17/5/2006. There are problems with the IX and/or X nerve (Paediatrician consultation 20/2/2007).
5. Repeated hospitalisations.
6. Cannot swallow anything lumpier than a fine puree. All feeds are fortified with complete feed supliments such as "Pediasure".
   

Explanation of the Medical Terms
The following is my simplified understanding of the terms and/or concepts listed above:

1. Failure to thrive is an extended period of time as a baby where poor weight gain and other growth deficiencies are noted. From Rapahel's growth charts up to one year old, you can see the points, indicating his weight, curving away from the normal growth spectrum. In addition you can also see the length and head circumference charts also dragging away below the bottom line. Weight is the first statistic to drop when a child is not getting sufficient caloric intake, once length and head circumference are also exhibiting prolonged reduced growth then there is good reason to find a way to get more sustenance.
2. A baby should grow normally if provided with the appropriate sustenance (including calories). But babies with growth hormone deficiency can exhibit a number of possible effects from having this problem (which include not growing normally). At this stage there are no signs that Raphael has growth hormone deficiency but because he is in a group that is at risk, he will continue to be monitored.
3. Gastro-oesophageal reflux is usually seen as vomiting, but it refers to the chronic condition where stomach contents occasionally (or frequently) escape the stomach back up into the oesophagus (throat).
4. Food, fluids and Raphael's own secretions pool at the back of his throat because he is unable to swallow them properly. In addition to this if he eats anything that is lumpy or not fluid enough then the food that gets stuck at the back of his throat agitates him causing a vomit reflex.
5. Raphael has a number of medical problems requiring him to stay in hospital and be subjected to medical procedures.
6. All of his feeds have extra calories and nutritional supplements added to them to ensure that he gets the right amount of nutrition and energy in his diet.
   

The Implications of These Conditions

1. Need to increase calorie intake
• Here are the steps taken to attempt to increase calorie intake:
• Introduced strict feeding regime to maximise number of feeds during the day.
• Attempted additional breast pumping to increase milk supply.
• Attempted supplying entirely pumped milk with added human milk fortifier to increase the calories.
• Tried a variety of bottle teats to try to find one that Raphael could drink from the most easily.
• Fortified human milk with formula for additional calories.
• Special formula "Infatrini" started on 4/12/2006. Migrated to "Nutrini - high energy multifibre" while in hospital in May 2007.
• NGT fitted on 4/12/2006 for supplemental overnight feeding through NGT
• An NGT is a short term solution and he used one for a long time. It was planned to insert a "mic-key button" g-tube as a more permanent solution but on 9/7/2007 we removed the NGT to see if he would grow without it and after two shaky months he started to gain weight properly by himself.
  
• Reached blue book "3 percentile line" around April 2007.
2. Will continue to monitor Raphael's weight looking for potential growth hormone deficiency and perform a thyroid blood test.
3. Raphael's repeated vomiting from the reflux makes it difficult to give him an appropriate quantity of food. We are always walking the fine line of wanting to get as much food into him as we can but not feeding him too much which will result in him vomiting all of it out. Raphael can use sign language to indicate when he has had enough food and he is skilled at knowing when to stop. We find that if we feed him more after he has indicated that he is "finished" then we run a very high risk of him vomiting, even two more spoons might be enough to cause a cataclysmic vomit. To try to stop the vomiting a fundoplication has been ordered for Raphael.
   
4. The pooling of secretions and food increases his risk of aspiration pneumonia becuase there is always some loose material near the entrance to his trachea (air pipe). The problem with lumpy foods causing vomiting means that we only feed Raphael puréed foods. However the lack of oral stimulation by not eating lumpy foods is likely to cause problems with learning to speak.
5. Hospitals are terrible places to feed in. Nurses are generally too busy to provide food at the precise times necessary to maximise his food intake. For example, at home we are able to get about 750ml of milk into Raphael per day but when in hospital we can only get about 500ml in if we work really hard. In addition hospital procedures have required days and days of reduced or no food.
6. With all the extra calories we are adding to Raphael's food, we have to make sure that Raphael maintains his hydration level appropriately by looking for signs such as clear wet nappies and saliva in his mouth.
   

Summary:
His growth is ok at the moment and is improving each time we weight him. He is now putting on weight with fortifeid feeds and no longer requires tube feeding.

Raphael will have a thyroid blood test in the future.