Preparing for Birth
The upcoming birth of your baby can be a very emotional time… along with all of the excitement and anticipation can also come some anxiety. Luckily, with some additional planning and preparation, you can help ease some of that anxiety! Here, we share tips from fellow cleft parents on how you can best prepare for the birth of your child. And most importantly, don’t forget to take lots of pictures of your sweet, precious newborn (schedule a hospital newborn session if they offer it)… that smile will be gone before you know it, and you will be so glad you have those pictures.
Parent Birth Tip #1: Meet with the Cleft Team (or a few if you can!)
Meeting with the cleft team can be immensely helpful in preparing you for what to expect and to help with learning how to feed your baby. Many cleft teams will even provide you with a few different cleft bottles to try. We recommend meeting with several teams and interviewing them so you can pick the one that fits best with your family. Cleftopedia’s team listing can help you find the teams in your area.
Know that you don’t have to go with whatever cleft team you are initially referred to (usually they just send you to the closest one or the one associated with their hospital). You absolutely have a choice when it comes to selecting a cleft team, and I highly recommend meeting with more than one.
When considering what team to go with, you want one that has a lot of experience with your child’s specific type of cleft. Ask them how often they perform that particular repair, request before and after photos, and find out what type of presurgical technique they use. This will help you make an informed decision!
Get a prenatal consultation with a cleft team. They can help you prepare for feeding your baby and give you an idea of what the next year will look like in terms of medical attention. Also, look into your insurance policy that you plan to put your child on.
Interview different teams (if you have more than one option)!! I’m so happy I met with two different ones because they both use different techniques.
Parent Birth Tip #2: Learn how to use the special feeders.
Educate yourself on how to use the special feeders. Don’t rely on the nurses or hospital as most are not experienced with clefts and will not know how to use them. Cleftopedia’s special feeders page offers a variety of videos to help you learn how to use them.
Feeding your baby is YOUR responsibility, not the nurses. They may offer advice and help, but you need to take control. If something is not working, change it. If one bottle isn’t doing the trick, demand another one. If your baby isn’t taking to any bottles, request a syringe. If you know about your baby’s cleft before birth, watch videos online of the different bottles and feeding methods so you know how to do it. Don’t be afraid to educate the nurses! Even very experienced nurses may only see a few cleft babies in their career and may be very rusty as to feeding. Plus, as your baby’s mother YOU and only YOU have a natural instinct to know what your baby needs and if the feeding method is working or not.
Educate yourself on feeding techniques and bottle options. Other than that, give way to your instincts and enjoy the perfection that rests in your arms or on your chest and do tons of skin to skin.
BYOB (bottles!). We had four different types of bottles and several different nipples (Dr. Browns specialty feeders and Y-cut, Pigeon, Haberman, and Mead-Johnson). Our nurses were asking us questions about where we got them and how to use them, and we were at hospital with a level 3 NICU. It was a big confidence boost to have feeding options! If you want to try breastfeeding, do so. Know that it might be difficult depending on the palate, and have a back-up plan (pumping/formula).
Make sure you are trained 100% on how to feed your baby. I wasn’t and she struggled for a month before the doctor realized I was feeding her incorrectly.
Be open and willing to try different bottles, feeding methods, pacifiers etc. Focus on one day at a time. Try not to get frustrated when something is not working (example bottle/gaining weight, etc). Ask for advice and help. Educate yourself about options.
Know that you/your baby are not the only ones that can’t figure out the special feeders at first try!! It’s trial and error, all of which is typical and if you get it on the first try, way to go super momma/baby.
Be your babies advocate!! Stand up to the docs/nurses if you feel strongly about it! I wish I had told the NICU team I didn’t want her having a feeding tube unless she absolutely needed it; I believe she would’ve been fine feeding with a syringe the first day or so, it was just the docs/nurses go to to just put a feeding tube in with a cleft baby without even trying other ways first.
Always remember to let others try to feed baby too, that way you are not the only source for feeding. Mommy needs a break too, even if just for a shower or some much needed food!
Our hospital only had the large nipples for the pigeon bottle and our daughter had the most petite mouth. We did not know until a month later that there were different sizes. Also learning to “y” cut the nipple for faster flow helped a ton! Before, it would literally take our sweet baby 45 minutes to drink her bottle.
Be patient, feeding takes longer.
Parent Birth Tip #3: Create a birth plan. Cleft DOES NOT automatically mean NICU!
Many hospitals will automatically send a cleft baby to the NICU. THIS IS NOT ALWAYS NECESSARY!! While some babies may need it, a cleft in and of itself does not automatically require a NICU stay. Don’t be afraid to fight them – you should have a chance to try feeding your baby first! Having a clear birth plan that outlines you do not wish your baby to be sent to the NICU or given a feeding tube unless absolutely necessary will help. Don’t be afraid to disagree with the doctors and nurses.
Write a birth plan! If you don’t anticipate other health issues, you can advocate for what is important to you. For example, we wanted our little guy to be evaluated by a NICU team in my delivery room, and then we wanted to do skin-to-skin. Talk to your OB about this ahead of time. Obviously, if there were complications or health concerns, we would have to revise our plans, but everyone knew we wanted to avoid a NICU stay unless, of course, it was medically necessary. Because I was very clear about this in our birth plan, we were able to room in, and we were never separated. We went home together 48 hours later. It is MUCH easier to be proactive than reactive. But most of all, be prepared to fall head over heels in love with their sweet face. Take pictures, and share the heck out of them with your family and friends. You’ll miss that face SO much someday!
Find out ahead of time your hospital’s policy regarding cleft babies and the NICU. Some hospitals send them there, regardless of condition. Have a “cleft” birth plan. What bottles and anything else they should come prepared with. Doctors and nurses are not as educated as one would think regarding clefts.
Ours was a surprise in the delivery room so no preplanning. Definitely educate yourself quickly and do not rely on the hospital for all the information and referrals. Start with them, but do your own research too! Remember you are the momma and ultimately in charge so PUSH for what you want…like baby in your room, feeding your baby, pumping or formula. If you do not ask or push then nurses will do it their easy way and they may know less about clefts than you will because you are dedicated to baby and learning it! Due to baby’s health some feeding and care decisions may be out of your hands but fight to do what you can!
Most nurses do not have experience with clefts. Be ready to teach them instead of vice versa. You have to be your child’s best advocate. They are quick to put cleft babies in the NICU. They are also quick to give them feeding tubes. You have to be on top of them and make decisions carefully. Demand a feeding therapist’s help. Don’t give up on trying to feed. If your baby has a cleft palate realize that breast feeding most likely will not work. Just because they latch and look like they are sucking does not mean they are expressing enough milk. This needs to be very, very closely monitored. Wet diapers are very important but the first day or two they are still hydrated from before birth. It’s after that that they can go downhill fast.
After the birth, take notes because you think you will remember things, but you wont! Maybe you can delegate that to dad. If your babe goes to nicu or specialty nursery, You can record doctors and nurses names, what they said, and how feedings went, including how feedings went with specific nurses. The nurses write down all that stuff, but you won’t really have access to it, so you need your own notes so you can see the patterns.
Know hospital policy for cleft affected babies. We were able to have our daughter with us three entire time. Some hospitals will try and send baby to the nursery automatically. Make sure the nurse-staff knows you’ve been educated on how to feed the babe prior arriving and they’re more likely to leave you be. But don’t be afraid to ask questions if you need.