Bobby's Dairy: An Update
Southbury CT USA
As told to Patty Spanjer, Dalton GA USA
From: LEAVEN, Vol. 41 No. 6, December 2005-January 2006, p. 132.
Editor's Note: Bobby Whitehouse's story was originally written about by his mother, Trish, in the article, "Bobby's Dairy: Nursing a Baby with Chylothorax." For more information, see the April-May 2003 issue of Leaven.
Chylothorax occurs when the lymphatic system has been damaged. The body is unable to deliver fat to the bloodstream correctly. Instead, fat accumulates in the chest cavity. It is called "chyle" and is a form of fat. In the case of five-year-old Bobby Whitehouse, this was the result of heart surgery.
Bobby continues to do well medically. He weaned off the gastric tube feedings when he was almost four. He never really latched on and the closest he came to nursing was to lick milk dripping from his mother's nipple, but the oral aversion (probably caused by being on a respirator) was so severe that it took him years to overcome gagging on most things in his mouth. His mother, Trish, continued to pump her milk for him, and gave it to him through his gastric tube and later in a cup.
In June of 2005, Bobby had heart surgery again. It is hoped that he will not need to undergo more heart surgery for many years. Before the surgery, he had low oxygen saturation levels (the amount of oxygen in his blood) and would easily turn blue when he exerted himself. He was also very short of breath and had difficulty keeping up with his peers.
Bobby had a rough recovery. At one point he was so critical that his body shunted the little blood flow it had to the major organs such as his brain and heart, but the "less important" organs, such as the liver and kidneys, didn't receive enough blood. Because of this, they were damaged. However, he was able to recover from both of these complications.
Unfortunately, Bobby has sustained a hearing loss due to the medications he was on in the PICU. It is believed this is from the ototoxic medication (drugs that can cause hearing loss and tinnitus or ringing in the ears) and the damage was done at the time he was given the medication; it will not be a progressive condition. He now must choose a color for the hearing aidehe would like it to be red.
During his latest surgery he again developed a chylothorax, and Trish had to centrifuge her milk again for him, while also giving him fat-free solids until it healed. This time, though, the medical team implemented the use of the defatted milk immediately because of all the hard work Trish and her husband, John, had done the first time.
The improvement since his surgery is remarkable. He is pink, has no shortness of breath, and can easily keep up with the other children in school. He is now five, and in a pre-kindergarten class where he continues to receive special therapies such as occupational therapy, physical therapy, and speech therapy, to help him make up for the missed time of being in the hospital so many months over the last five years.
Trish has been contacted by health professionals around the world for instructions and information about how to defat human milk for other babies who have the same complication after heart surgery. The case has also been written up in the Annals of Thoracic Surgery, which has given defatted human milk the medical credibility it needed to be used as an alternative food option for babies with chylothorax. Trish knows it has saved other babies' lives as it has her own son's, and she is currently writing a book about her experiences.
Trish Whitehouse lives in Southbury, Connecticut, USA with her four children and husband, John. She has been a Le Leche League Leader for 12 years and is a registered nurse who, when working outside the home, was a cardiac rehabilitation nurse. Patty Spanjer is a Leaven Contributing Editor.