Sunday, January 29, 2012

The Challenges We Face

Every pregnant woman anticipates the 20 week ultrasound with a sense of excitement tinged with nervousness.  There's so much relief to see that squirmy little baby on the monitor and to hear that everything is okay.  This pregnancy I was especially anxious to hear those words.

The day of Audrey's birth I was thrilled when they lifted her out, checked her over and told me she was perfect.  It was every mother's dream come true, to have a healthy baby placed on her chest. 

Since breastfeeding Barrett was incredibly rough at first, I was determined to have a better breastfeeding experience this time.  Everything seemed to be going fine in the recovery room. 
It was only later on in the day that something just didn't seem right.  Audrey kept bobbing on and off and was making strange noises while she was nursing.  I asked that a lactation consultant be called in to see us and make sure I was doing everything right.

When the LC came into the room, her first step was to check the baby over and make sure there was no tongue-tie or anything that could impede her ability to nurse.  She checked her and said "did you know she has a cleft palate?" 

I was shocked.  No one had noticed yet and thank goodness I was an experienced mother and knew that something in her eating wasn't right.  I cringe to think how long it may have taken to find out if I hadn't had the experience to sense that something was off.

The pronouncement caused some panic that night.  We could see the hole in the roof of her mouth whenever she cried and it didn't look good.  I was instructed to stop feeding her until we had her checked.  We made sure she was in the nursery to be monitored during the night in case anything happened with her breathing.   We anxiously awaited the neonatologist, who arrived around 3am to check over her and talk to us.  He gave us the good news that there was nothing severe wrong and we should continue to feed her as normal and just make sure she seemed to be eating okay.  Her pediatrician arrived in the morning to check her and give us more information on further steps.

I tried and tried to feed her but it just wasn't working.  I had to concede and give her formula twice, which I never once gave Barrett, just to make sure she would eat something.  

What is a cleft palate?
So many people automatically think a cleft palate is the same as a cleft lip, that it means the facial deformity with the split lip.  In many cases, an infant is born with both a cleft lip and cleft palate.   But a child can be born with either one or the other.  A cleft lip is visible but is in fact much less severe than a cleft palate, because these children can generally eat normally and repair is done early in the child's life. A cleft palate impacts eating much more and surgery is much more invasive.  Interestingly, more girls are born with a cleft palate but more boys are born with a cleft lip or cleft lip + palate.  A cleft defect is actually a fairly common birth defect, impacting around 1 in 600 or 700 births. 

Early on when the palate is being formed, for whatever reason the palate doesn't fuse together.  In Audrey's case, her palate is primarily in the back, in the hard part, with just a bit in the soft part of the palate. 

What does this mean?
What this means for us in the short-term is that I cannot breastfeed Audrey.  Because of the open hole in her palate, she can get the proper suction to eat normally.  It's equivalent to us trying to drink from a straw with a hole.  We can manage to get a little liquid maybe, but it's difficult and frustrating.  She won't be able to get adequate nutrition that way.  I tried to feed her this way but it just wasn't working.  So what I have to do is pump and bottle feed her with special nipples (that cost a lot of money unfortunately!).  Also, due to the open palate, liquid flows up easily into her nose.  We have to feed her upright to try to minimize the likelihood of milk going into her nose.  It's awful when milk comes pouring out of her nose during a feeding and she begins to choke.

She also has difficulty hearing due to this cleft palate.  She failed her hearing test in her right ear repeatedly at the hospital.  This is due to increased fluid in her ears from the palate.  We took her to an ENT at about 2 weeks post birth for a repeat hearing test and the doctor didn't even do the test, since both ears were so full of liquid he was sure she'd fail in both ears.  Her hearing is as though she's underwater.  She does respond to noises, so I know she can hear somewhat, but it must be muffled by all the liquid.  She is more prone to ear infections because of all this fluid.  We will be getting tubes put into her ears around her 3 month birthday. 

I always said breastfeeding for over a year was one of the things that was most difficult and rewarding and that I was most proud of having accomplished.  Let me tell you, breastfeeding was nothing compared to exclusively pumping.

Pumping is horrible.  It was horrible when I did it twice a day for Barrett when I went back to work and it's even worse doing it seven times a day now, with a newborn and toddler at home with me.  I dread every time I look at the clock and see that it's time to pump again.

But I am determined to provide Audrey with breastmilk for as long as possible.  Because of the likelihood of ear infections, I want to try to minimize the risks as much as possible by providing breastmilk, which reduces the odds of ear infections.  Also, because of the way that milk comes out her nose, I would prefer to have her drink milk, which is much more gentle than formula.  And overall, breastmilk is just the best source of nutrition for babies, so this will keep her healthier and provide her the best start to life that I can give her. 

Next steps
We are working with a cleft palate team at the local hospital.  We are lucky that a very well regarded team is at our nearest hospital, especially since there are only 7 cleft teams in the state.  It is comprised of a plastic surgeon, a speech pathologist, a geneticist and an ENT.  We meet with them regularly to assess her weight gain and eating.  They will insert tubes into her ears at 3 months and perform a surgery repair at around a year and replace the tubes at this time.  If all goes well, this will be the only needed surgery, although most children need subsequent surgeries.  Since she is not impacted at her gum line, this should reduce the need for subsequent surgeries and hopefully her teeth will grow in fine.

We were so sad to learn of Audrey's diagnosis.  It brought new challenges for us as a family that I had never even considered.  I am scared for the surgery ahead and cringe that the thought of my baby being put under and operated on.  But of all birth defects for her to be born with, this is a fairly minimal one in the grand scheme of things. It is repairable and shouldn't impact her life once we are able to get it repaired.  I am sad that I can't feed her normally, which was a big desire of mine.  But she is beautiful, is happy and is healthy and I wouldn't trade her for any other baby in this entire world, no matter how many trips we have to take to the doctors or how many expensive nipples we have to buy. She is more than worth it!

1 comment:

  1. She looks quite happy and content! Soooo good to hear that you have a great team of doctors working with Audrey. I had no idea it was something that happened to 1 in 600 or 700 babies - wow! And, I can't believe you have to pump SEVEN times a day - ugh! What moms will do for their babies =)
    Take care - love you!