cleft palate...

[Natanya]

My son was born 5 weeks ago with a cleft palate. We did not have any clue prenatally. We had a beautiful homebirth and didn't even discover the cleft until about 7 hours later, when finally I checked his mouth really good because the suction when he nursed just wasn't there. I have now been EPing (exclusively pumping) all the time and feeding him with a haberman feeder which works wonders. I am scheduled to go back to work next week. I was planning to bring my baby with me to work for the first few months...I had breastfeed my other child and worked in the early months, didn't think it would be that hard. But now I am finding myself questioning my ability to work. Unfortunately I am the one who holds our insurance. My husband is self-employed. i have always been a busy mama...I'm a recreation director for my town, a ski patroller in the winters, and a homebirth midwife on the side. Having a child with special needs makes you rethink all of that. I have wanted for a while to be at home with the kids and just be a midwife like my heart desires, but the darn steady paycheck and health insurance have kept me working. Its overwhelming and just wanted to post to talk with other moms who may be going through some similar feelings. Thanks.

[2boyzmama]

Congratulations!!

I understand all the jumbled emotions, I'm in a similar boat, I hold the steady paycheck and the insurance, so me staying home was not an option. My husband is a student, even if he were to drop out of school and get a job, we'd lose our house, our cars, we'd default on credit cards, student loans, etc all for what...so I could be home and the kids be on Medicaid? Instead we have worked out what we can, I work, he arranges his classes so he can be home almost all the time, my bosses work with me so I can go to all the appts, I work from home sometimes...somehow we have made it 3.5 years with our special needs kiddo and this arrangement.

Have you seen a cleft palate team yet? What is their plan for repair? I'm so glad that the Haberman works so well! It actually did not work well for my son, we really struggled with feeding, but he's sitting in my lap right now nursing at 3.5 years old! It's been a long road, for sure.

I think you can still bring baby to work, can you pump at work? Find a way that allows you to do it with as little interruption to your work, can you pump at your desk? Do you have a door? A curtain maybe? I have a door and I close it and hang a sign asking others to knock so I can pump. I've been walked in on twice, but word quickly spread, and no one dares to open the door anymore, LOL!

[gsmom]

Congratulations on the birth of your babe! I don't have any fantastic words of advice, but wanted to give a big hug .

[Natanya]

thanks for the encouraging words. We've been to Boston once to meet with the cleft repair team. They are looking at doing the surgery when Asher is 8-10 months old. I have an early intervention team which comes to the house once a month, and will help us transition to the sippy cup at 6 months so he can be ready for the surgery. they are going to do a swallow study soon. Started work on Tuesday and worked from home yesturday and today, But need to be in the office fulltime next week. They will let me bring my son, thankgoodness. just got my hands-free pumping bra, so that should make things easier. We are still trying to figure out the work thing. I am feeling incredibly overwhelmed and just want to sit back and feed my baby, but that is not reality right now. Again, thanks for the words of encouragement.

[momtoalexsarah]

Hugs to you , I have a cleft child - she is 4 now and even though she had a very late (2years 9months) repair done she is doing fantastic. The fact that they are looking at a 8-10 month repair time is wonderful, the sooner the repair is made the less chance of a speech issue (some early repair cleft kids don't even need speech thearpy). There are also alot of cleft kids the will go on to nurse post repair so keep pumping the breast milk is the very best for him right now. If he is asperating at all the breast milk will likely not cause any problems in his lungs (formula will).
The back story on my DD, we knew there were problems with her suck at birth, but suspected premie issues as the cause, besides a very very high arch and split(bifed) uvula her mouth looked "normal" she was assesed by a new Pead on her first birthday and he told us then that she has a submucus (covered) cleft palate - she has the membrane, but there is bone missing and the muscles where not placed correctly. Because of the type of her cleft the cleft team wanted to wait and see - I wished I had pushed for a repair sooner. She was a very sick little girl by the time they finaly did the repair - that is only really clear to us now. So the sooner the better for the repair to be done. In the meantime watch for ear infections, they are common in Cleft kids and he may need tubes put in (these do work well for cleft kids - we've had 3 sets and if she needed another I will gladly have them put in)
Good luck and I will be sure to stop back and cheak to see if you have any more questions.

[Natanya]

oh...thank you so much for your post. It is so great to hear stories from parents. Now that I've done some research I have seen about the cleft your DD has. That's incredible. I'm glad all has worked out in the end.
I was anxious about waiting till he was 8-10 months. I would rather not do the whole "introduction of food" thing. He had a hard time when we gave him the smallest amount of children's tylenol. The consistancy was too sticky and he got it stuck up his nose. It was a real challenge. The breastmilk is working great.
I do have a question though about the ear infections, as I do hear they are incredibly common in cleft palate kids....For my older son, I would put breastmilk in his ear to help heal an ear infection, but now I'm not sure that that is a possibility...wonder if I should ask the ears-nose-throat specialist, or do you think he will think I'm crazy.
So interesting to have to do things so differently with my second child.
Thanks again for your response. Always good hearing from others.

[2boyzmama]

Ears are our nemesis here However, before I scare you, my son has not only the palate issue, he also has malformed inner and outer ears, plus an immune deficiency, so he has like a triple whammy.

With my older and younger sons, I will try everything for a mild-moderate ear infection...breastmilk in the ear, garlic drops, chiro, etc. But for my cleft-effected kiddo, it's straight to an antibiotic, and we have a cycling list that we use (never use the same antibiotic twice because of fears of resistance) He does have ear tubes, which have been wonderful for him, it means no doubt about whether he has an infection (because I can literally SEE it coming out of his ears, think of the nastiest green snotty nose you've ever seen on a kid, and imagine that coming out of an ear, sometimes with blood and puss mixed in. Pretty obvious!) If, after the first course of antibiotics, the infection isn't gone, or if it comes back quickly, then we culture the drainage to find out exactly what bacteria it is. Then we do antibiotic sensitivities in the lab and change his meds as necessary.

Even after doing this, and remember my son is more complicated than your "average" cleft kid, we have had to get a PICC line once (and just recently were very near getting another one) A PICC line is like an uber-IV, goes into a large vein and the internal tubing threads up to a very large vein near the heart. He was home on an IV pump for 4 weeks getting really strong antibiotics that way (too strong for him to take orally without damaging his intestines, and too strong for a surface vein with a regular IV)

SO...no, I never try the other stuff with him. BUT...that doesn't mean it won't work for your son!! If he has nothing else going on with his ears, then maybe a few trips to the chiro will be just what he needs. Maybe some breastmilk in the ears to relieve inflammation will be perfect. You won't know until you try, but just beware that you're not dealing with a "typical" kid now, so it might not work as well as it did for you older son.

[Natanya]

Wow...sounds like you have had your far share. Continued good luck to you. How did u find out your son had malformed ears?
Thanks for your story, scary but helpful. Have our next visit to the craniofacial team next week. I think they will be scheduling the next round of specialists.

[momtoalexsarah]

Megan's ear issues have not been as severe as Connors, but she has had ALOT of sinus issues because she refluxed everything through her nose - and since she was older at the time of repair that ment food and drinks as well so her sinus where a regular breeding ground for infections. We have had issues with antbitic resistance, and it isn't fun at all.
With and early repair I would immagine that you will be able to avoid alot of the complications we have had. I would not start solids till after the repair - just not worth it. If your son is not getting enough BM then I would see if you can get donor milk.
The problem with cleft kids and ears is that the eustion tubes are not formed properly - or the opening at the bottom is not there, or blocked by the adnoids (which they can not remove)
Is your sons cleft unilateral, bilateral or U-shaped(sometimes called a sydromic cleft)