from Trish Whitehouse, who is unable to post directly at the moment due to an
e-mail change.
Rachel Myr
I have a now 3 yr, 4 mo. old son who was born with a congenital heart defect.
We went through all that you have gone through and unfortunately more, as my
son was about to be weaned from the NG tube when he went into the hospital at
3 months of age for his second scheduled heart surgery, and very nearly died.
You can read my entire story on my web site,
http://home.earthlink.net/~chester2001 and go to Index of documents, then
click on "Leaven, April/May 2003. There you will find the whole story in its
entirety, as it was published in Leaven which is a La Leche League magazine
for leaders. If you have any doubt that the milk you are giving your baby is
doing anything, you won't after reading this. But anyway...
We too have a Gtube in our son. After that hospitalization, he came home on
continuous feeds, totally refused anything to do with my breast, and had a
wicked oral aversion from all the interventions at the hospital. I have now
been pumping for him for all that time, 3 yrs 4 mo. He is only getting about
5 to 6 ounces of my milk a day, but I know it makes a difference because he
doesn't get colds, (well, once in a while with three older siblings, how can
you avoid it), has never been on ABX since he left the hospital 3 yrs ago, and
every time we go to a cardiology appt, the doctors are all dumfounded as to
why he is doing so well. He should be a very weak, sickly child. He is
active, healthy, and quite alive. He has just transitioned off the Gtube this
last summer, and since June he has been eating totally orally. If you want to
see another one of my stories (guess I like to write a lot!) go to
http://www.mealtimenotions.com and click on Parent stories. Both of them up
there are mine.
Anyway, we are supplementing the breastmilk with real food. He was 24 months
old before we could do this, because until then he had the NG tube and all I
could give him was breastmilk and a little goat milk to make up the volume I
couldn't quite pump. About 18 mo ago I started taking domperidone and my
supply nearly doubled at that time, drastically decreasing the need for goat
milk supplementation. His stools have never been constipated, his skin is
just like my other children who had been breastfed (smooth and soft), the
stoma site, as Darilyn mentioned, has NEVER been infected or even the
slightest bit red, and I know it is because of the breastmilk. Breastmilk is
digested very quickly and completely, as I saw with my own eyes. I even
posted it here because it was so amazing...the day he had the Gtube put in, we
had to see how he could tolerate the breastmilk before we could take him home.
First they tried 30cc pedialyte to see if in 3 hours he had any residual. He
had none. Then they upped it to 60, and he had a small residual, about 10 or
20cc. At 90cc he again had a small residual at 3 hours, I think it was about
20cc. Then they felt it was safe to move to breastmilk. At 3 hours, of the
30cc, he had no residual. At 60cc he had no residual. For 120cc, we were
getting sick of the numbers game, and I decided to check the residual at 45
min to see if we could hasten our departure from the hospital, and sure
enough, all the breastmilk was gone. The breastmilk had cleared his stomach
faster than the pedialyte, and we proved that over and over again.
Though I have no scientific studies, I can tell you from this personal case
study of 1, there is no doubt that breastmilk has made a huge impact on this
special needs child of mine. The last time one of his doctors from the PICU
saw him (when we were at the hospital for a routine cardiology visit) she just
stood there looking at him, dumfounded, speechless, with tears running down
her face. She couldn't believe how great he looked, and later admitted to me
that she never thought he would ever crawl, let alone run around the halls of
the hospital.
Maybe it's time to move onto blended foods through the Gtube to continue to
maximize your daughter's nutrition and compliment the best beginning she ever
could have hoped to have, which of course, is your breastmilk. I have to
agree with Rachel, how could these professionals, who are supposed to know
special needs kids, argue that breastmilk supports and protects these kids'
fragile bodies and vulnerable health. I sometimes don't get it, I really
don't.
Feel free to write to me off list, but I thought (and hope) this was an
appropriate response to post to everyone. Many of the people on this list
know my story and have been a source of support and strength for me as well.
Good luck, and your daughter is very fortunate to have you as her mom.
Trish Whitehouse, RN, LLL Leader
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