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Monday, August 4, 2008

The 362nd Baby on ECMO at MCG

My 2nd cousin, Preston Jefferson Deutsch is 8 days old today and he is the 362nd baby on ECMO at the Medical College of Georgia.

Geoff my younger cousin and I grew up together in Atlanta. We don't see much of each other now. Geoff and his wife Kristen also have a daughter. I saw Kristen early in this pregnancy at another family event. Last Sunday my mother told me that she delivered Preston quickly and easily at a community hospital 12 days before her due date. The baby was fine for 24 hours. He fed and got cuddled and loved, and then became short-of-breath after a day. My mother updated me that he was transferred to a regional hospital to be intubated, but continued to get worse. Next he was transferred to MCG for ECMO (a lung bypass). Neurological and Cardiac systems have been evaluated and from what I hear are intact.

This is the last update my mother sent me:

"Baby is still holding his own. Geoff & Kristen have been reading to him and talking to him. Kristen is pumping but Aunt Carol does not know if they are feeding the baby breast milk. They are going home for 2 days to be with Sydney… she starts school tomorrow."

Geoff and I both trained at MCG. He is a General Surgeon. Kristen is a health professional also. My training experience in this very NICU definitely shaped my future of working with mothers and babies. MCG provided ECMO services 15 years ago when I was in there. Being the 362nd baby gives you an idea of how often they need this technology(really not that much). I do remember them being proud and celebrating their ECMO grads. I do not remember them emphasizing how important providing nature's miracle drug--breastmilk--to these critically ill ones is, I just don't remember. It seems to me if you go the extreme to provide life saving technology, you need to include the simple things like skin-to-skin and mother's milk. From my mother's e-mail it sounds like my cousin and Kristen are having an opportunity to provide their best in the circumstances.

I wish I could do more then sit here and feel helpless and wonder how this precious baby got so ill. I wish I could be right there ((in between the babies mouth and mother's breast if I could get that close)) to make sure the milk goes where it needs to. I often think of going back to MCG for a visit and I think what sad circumstances it is for Geoff and Kristen to go back under these circumstances and away from their daughter and away from extended family. I wonder in tears if anything to prevent this could have been done while I feel out-of-control. I also wish I had a photo.

BUT I am encouraged by another little one who has touched my life. Colton who is a Miami ECMO graduate, who followed up with me in this practice. He has done remarkable well. ECMO stands for Extracorporeal membrane oxygenation. Kristi, his mother, answered some questions for me today:

...its definelty a last resort thing. When Colton went on they told me he had a 20% chance to live if they put him on it and that was about average for all kids going on it. There were two other kids on ECMO before and after Colton and neither one made it off. As far as breastfeeding, the kids are NPO, they are basically in an induced coma and intubated so nothing at all except IV. During this time I pumped and pumped and pumped. Colton was on 7 days....they told me that there is a great risk putting them on ECMO. They said the longer they are on the more chance of them not making it, as well as having infarcts (like colton did). They check their brain through ultrasound daily to see if they have a bleed, if not they keep them on, if they see anything, they have to take them off. Then gradually, they try to wean them off the machines to see if the heart and lungs can do their jobs. Colton, luckily, came off the first time and his body could handle it. I know of of the kids who didnt make it, they tried to take her off multiple times and her heart kept giving out so they needed to put her back on. Eventually they said enough was enough after 4 weeks or so. How long did u say your cousin was on for now? I hope everything turns out OK. Unfortunately, most ECMO kids have some issues when coming off, but Ive talked to many parents who have said their kids were a bit developmentally delayed at first, but later they are just fine. Its a very scary thing, thats for sure. I had to really forct the issue with breastfeeding...they wouldnt even let me do kangaroo care after ECMO when he was coming off the drugs and such. It was ridiculous. Then, it was every kid in the NICU was given a gtube before they were let go. That was Miami Childrens, so hopefully Georgia is better. Pleeeese let me know how it goes and the status, we are hoping for the best for your family.

Natures Way Soy Candles & More


S.A.M. said...

I really agree with what you wrote about hospitals needing to encourage breastfeeding and skin-to-skin care for newborns, especially those who aren't doing too well.

It's so sad that the machinery and synthetic drugs seem to come first (although I know they're necessary also), and breastmilk is just an afterthought.

I really hope that your cousin's baby improves very soon. I hope that he is being given the breastmilk and that it has a speedy effect.

crispy said...

So sorry to hear about your cousin's baby. Hope all goes smoothly from here.

Christy ~ Munch75 said...

I hope things get better with your cousin's son. I had never heard of such a procedure.

I had never read Colton's story either ... isn't it amazing how many lives you have touched? :)

Allana Martian said...

How sad! We'll be praying for the little guy, for sure!

Permission to Mother said...

He's been weaned off the ECMO and held by his mom.

S.A.M. said...

Oh I'm really glad that he's off the machine now. I hope that he continues to go from strength to strength.

Deanna said...

I found your blog through a book list that you had on amazon. I was just browsing and saw this post about ECMO. My niece could not get oxygen when she was born, and was placed on ECMO when she was just 36 hours old. It was a scary time - the percentages are awful. She was developmentally delayed and was in all kinds of therapy for several years (speech, occupational, etc). She started kindergarden today and the only difference between her and other kids is her little scar on her neck and the fact that she only has 3 tubes (veins/arteries, I don't know) into her brain where the rest of us have 4. Technology is amazing sometimes. I don't think she got breastmilk until she was off the ECMO either, but then she nursed until 11 months. I like your blog. Thanks.

Permission to Mother said...

Thank you for your encouraging response about your niece. Please come back!

Preston went home today!

For clarity, I "do" understand that you can't put a baby to breast that has tubes down his throat and on paralyzing medication.
However, there seems like there should be a way to give miracle babies a miracle substance. If we can provide ECMO certainly we can find a way to give breastmilk to these babies? You'd think?

Permission to Mother said...

An update straight from my cousin:

Baby is well

Parents have not and may not recover

No breast feeding issues here, in fact Preston is the first post ECMO baby not sent home with a feeding tube. 1 out of 386.

The only issue we have is where to put food in the freezer, since we have three weeks of breast milk stored there

S.A.M. said...

I'm so glad he's home now and is feeding well. You must be doing something very right to set that record!

Hopefully now that you've set a precedent there will be more in the future.

I'm sure you'll really enjoy him being home with you now. Take care.

M&M said...

My daughter survived ECMO 10 years ago. She breastfed until she was 5 and had skin to skin contact as soon as they were able to get her onto a soft vent (12 days after her bday on my sons bday). She had a stroke 5 days in on ECMO.

We are now going to Canada to do Hyperbaric Oxygen Therapy (HBOT) to repair some of the damage. Please pass our Blog link along to your cousin's so that they can know about emerging technologies.

Also they can write if they need emotional support from another ECMO mom. It was helpful to me...


andrea carabajal said...

Hello i am currently in the hospital my baby boy was put on ecmo machine as well i would like to talk to parents whos had their babies on this machine my son made it off ok but we are having problems with him wanting to eat...

andrea carabajal said...

Hello i am currently in the hospital my baby boy was put on ecmo machine as well i would like to talk to parents whos had their babies on this machine my son made it off ok but we are having problems with him wanting to eat...

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