My I belong here?

Allyson - posted on 05/03/2012 ( 9 moms have responded )




Hi everyone! Two months ago, after being told by several doctors that I could expect a perfectly healthy baby, I was rushed into an emergency C-section because my baby's stats flat-lined at 37 weeks. Well, once he was out, they were able to open his airway and save his life. They explained, then, to my husband and I that our son had the very rare genetic disorder known as Treacher Collins Syndrome.

In a very small nutshell, my son has underdeveloped ears with no ear canals, a cleft palate, underdeveloped eyelids, barely any cheekbones and a small jaw. The small jaw made his tongue be forced to the roof of his mouth when he was growing, so the cleft palate resulted. When he was in the NICU, I pumped like crazy so that he could be getting my milk--hoping that working with lactation consultants would surely lead to breastfeeding success once he was stable enough to do so.

The problem: he had to have a tracheostomy put it (a hole in his throat so that he could breathe without assistance). It makes it so that when I would try to have him latch--no matter what position I tried--my breast smothered it and he would panic. Even with a nipple shield, his cleft is so severe that he can't swallow and suck at the same time, anyways. Well, my mother is a LLL member, and I knew I always wanted to breastfeed. I know the benefits, and I just refused to accept the difficulties I was facing. We tried a special bottle for cleft palates and filled it with my breast milk, but it would just pour out of his nose if he allowed us to force it in his mouth at all. Sadly, we had to place a G-Tube in him so that he could get food directly to his stomach. Still, I pumped because I knew it was the very best thing for him--the one thing I could actually do for my poor little guy. I was told by a nurse that she had never heard of a baby being sent home with a G-Tube not needing to be supplied with formula, and that made me very happy and proud.

I have been pumping for 11 weeks now, and he has never needed anything more. Sometimes I let him kind of just explore my breasts without the pressure of latching, and he sometimes roots on me, so we still get to bond in that special way. I take several supplements to maintain my milk supply, and between pumping 8 times a day and taking care of a baby with special needs, I don't have time for anything else. Would you ladies consider me in your group even though I can't actually get him to latch? I'd love to be able to ask pumping/breastfeeding related questions in an environment where I know everyone is supportive and of the same mindset. Ultimately, I'd like to know I haven't failed and am still doing good things for him, I guess.

Anyone else out there with a similar story?


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Allyson - posted on 05/13/2012




Thanks, ladies. I'm sure you all are too. Happy Mother's Day! It's been a tough one balancing seeing both sides of the family and finding time to pump, but it's almost over. Ha

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Wow! That's an amazing story and you are an amazing mommy! You are most definitely welcome here. We strive to keep this a safe, supportive and encouraging place. I think you fit right in :).


Nicole - posted on 05/12/2012




Certainly! Even if he never latches the expressed milk and skin to skin time is tremendous. If you can manage to wear him in between pumps it will help your production efforts because of the oxytocin exchange. Great job!

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You most certainly belong here, you are an incredible mum to work so hard for your son to get breast milk many other mums would have given up, pumping is hard! I admire your stamina and strength to continue through adversity.....welcome :-)

Debbie - posted on 05/07/2012




My lo was born with a bilateral cleft lip and palate and I pumped for the first twelve weeks and decided to stop just before his lip repair. Keep up the great work!

Janice - posted on 05/04/2012




Of course you belong here! You are absolutely amazing in my eyes. I don't pump much so I am useless to you info wise but I wish you and your little one all the best!

Lori - posted on 05/04/2012




Allyson - yes you belong here in this group. This group is for anyone feeding their baby any amount of breast milk. I know of some working moms who Exclusively Pump. You have a different reason, but you are also Exclusively Pumping. You and other exclusively pumping moms are sill providing your breast milk to your baby in the way that works for you and your baby.

And way to go! With all you've been through and all you're trying to do for your little one many moms would have given up. Not only have you not failed your baby - you are doing WONDERFUL things for him. You both will have more challenges than most of us will face, but with your determination you'll make it through.

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