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Colton's Story
I met Colton when he was six weeks old, just a few days before he breastfed  for the first time. I met his mother prior to this pregnancy and again early in her prenatal care. She breastfed her first son, had been attending La Leche League meetings, and knew without question that breastfeeding was the only feeding option. Colton was born after a precipitous premature labor at 35 weeks gestation. He immediately had respiratory problems, and subsequently he was unable to co-ordinate his suckling with breathing. He was transferred to a South Florida Neonatal Intensive Care Unit and ended up on ECMO (lung bi-pass machine). He was exclusively fed breastmilk, his mother expressed, by a nasal-gastric tube. She was able to pump enough milk to meet all his needs. His breathing eventually stabilized. After a few weeks, he could breathe on his own, but he was not allowed to nurse. They said he would choke and stop breathing. He was diagnosed with developmental delay attributed to strokes (cerebral palsy) he suffered during his poor transition to life outside the womb.
His mom brought him to my office shortly after he came home to show me how he fed. He was already developing contractures in his hands and he did not support his head well, she pointed out. He had a gastric-tube that delivered her milk directly to his stomach through an opening in his abdominal wall. She was instructed to give him a pacifier while she poured the milk into the G-tube so that 'his facial muscles would have a chance to develop.' A pacifier was something that she never thought she would want or need but now he was therapeutically dependent on. She kept him in her arms, breastfeeding style, while maintaining eye contact as she 'fed' him. She was told to feed him every three hours. Like many breastfed babies he showed hunger signs sooner than three hours. Now out of the NICU, she could feed him per the tube on demand.
She explained to me why he couldn't nurse directly from the breast. He had a swallow study called video fluoroscopy. For the procedure, he fed from a bottle filled with dye and the fluoroscopy camera was used to see if he could swallow with out refluxing and subsequent choking. The test showed that he refluxed on the dye. Mom was strictly warned that she had better not give him anything by mouth or he would turn blue and stop breathing.
Upon hospital discharge she was given suction equipment. Incase he couldn't handle his own secretions; she'd be able to clear his throat with it. She told me that she actually never needed it. She also told me that she has tried dipping his pacifier in her expressed milk so he could have the pleasure of tasting milks sweetness. She reports to me that he never choked on the small drops of milk. She longed for the sensation of bringing her baby to her bare breast. So her big question now:
Can I put him to breast? Will he really choke? Will he be able to first latch after six weeks?
You won't know, until you try, right, I rationalized. First-if he was able to handle his own secretions, why couldn't he be put to an 'empty' breast? If he can suck on a rubber teat, he could suck at a breast? I know a breast is never truly empty, however, mom was pumping around the clock and knew her body and knew when milk flow slowed down. And second-- the mechanics of swallowing from a bottle are different than the mechanics of suckling at the breast, and the consistency of dye is different than breastmilk, Perhaps if he was allowed to 'breastfeed dye' (with a supplemental set-up) during the swallow study, he would not have regurgitated and he would have passed. Bottle feeding uses different muscles than breastfeeding. How valid is the test results using a bottle when the baby has never bottle fed.
So we made a plan. Mom would come to the office and pump her breast empty and then she would put him to nipple and see if he would latch. He did latch, and he did suckle,  and he did not choke. In fact he did quite well. He looked content at the breast like he'd been there all along. He made it look real easy—like what was all the fuss in the first place?
At home Colton continued to receive his breastmilk via G-tube. Every few days, she would comfort nurse on an empty breast. She took it, slowly; concerned that he might suffer with silent respiratory symptoms. He did get a cold and she was very worried that he might aspirate into his lungs revealing his 'secret' breastfeeding sessions. He never did develop aspiration pneumonia and she continued the feeds. The cold was probably something just going around and the breastmilk antibodies protected him from getting worse (just like it protects any other baby). She increased the amount of time on the breast and the frequency. Within three months he was getting all his milk directly from the breast! This whole time she was hush-hush about his breastfeeding 'in-case something bad happened.'
At three months he was scheduled to have a follow-up video fluoroscopy swallow-study to see if he could handle feeding by mouth. She e-mailed me the news.
Just wanted to say hi and let you know that Colton had another swallowing study... well... he passed!! YEAH!!! They say I can breastfeed him as long as he tucks his chin when he eats. He does do nasal aspiration so he cannot nurse lying down or it comes out of his nose. I finally spilled the beans. I told them he'd been breastfeeding... They said that if I listened to the doctor when he said nothing by mouth that he probably wouldn't be able to eat right now... so, now he can eat by mouth. He is getting so big now...15 lbs (see attached photo) !!! They even wanted me to start feeding him with a spoon and cereal, but I told them he wasn't ready yet... I want to wait until at least six months. He is only 51/2 months. ...k
They have since moved out-of-state to be closer to a children's hospital with the specialists he needs. I often ask how he's doing. I get e-mail updates telling me that Colton is doing well and continues to nurse, just as if his well-being is equivalent to a successful breastfeeding relationship. I can just imagine Colton saying 'Thank you Mom for your determination to breastfeed me.'
I am grateful for the permission from mom to publish story and photos.
Update on Colton
Just wanted to drop an email and let everyone know how our little Colty is doing. Since we got here to Tennessee we have been really busy trying to get all of his services coordinated. He currently goes to speech therapy once a week and next week he starts his physical therapy and occupational therapy in Nashville. He may begin a spasticity clinic also for his right arm. They just gave him a splint for his hand today to keep his thumb pointing out and stretch his muscle so he won't be so tight. We also went to the ENT today; I guess there is bad news too. They scoped him, pretty horrible scene, and they found that he is pretty much paralyzed in his voice box. The doctor said this was prob. from ECMO where they cut into his artery in his neck. Apparently it shares the same sheath as the main nerve for your voice box. The doctor said we should start learning sign language because he won't be able to talk. He goes to neurology in a few months so we'll see what the MRI shows this time around. Were pretty bummed around here as you prob. have guessed, but, life goes on, right. I am hoping he will walk. We are really going to work on that.... K
If you enjoy this article, you will enjoy the book Permission to Mother which includes the updated version.
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