Cleft Lip - Erie,CO

Hi K.,

Every state has a Parent Training and Information (PTI) center for parents who are faced with issues similar to your sister's. They will be able to connect her to local resources and support.

The PTI in Oregon is:
Oregon PTI
2288 Liberty Street NE
Salem, OR 97301
###-###-#### Voice & TDD
888-505-2673 in OR
Fax: ###-###-####
____@____.com
www.orpti.org

Shirley, mom to 3 and works at Colorado's PTI, PEAK Parent Center

Aloha! My sister-in-law sent me this request for advice and I joined the site to answer it. My daughter was born with a cleft lip, but they missed it in the ultrasound so when she came out it was a shock. I'm not sure which is better, knowing and stressing or not knowing and being shocked. Both scenarios are a little scary.
My advice is, NO WORRIES! The surgery and recovery time for these procedures is EXTREMELY advanced. My daughter had 2 surgeries, one at 3 months and the other at 12 months. You can only tell that she had a cleft if you are in the medical field, no one else believes me when I tell them.
YES! You can breastfeed. A cleft lip space is filled by your breast, most often, so if breastfeeding is important to you it is not any different from having a child without a cleft lip. Also, my daughter breastfed for a year and with the surgeries, she found a lot of comfort in doing it between and after the surgeries after everything was healed.
I would suggest finding a children's hospital specifically. They were very aware of the mother/child relationship. They had little tiny gowns, blood pressure cuffs, toys and cribs. I stayed with her the whole time she was in the hospital. They brought up a breast pump so that I could feed her through a syringe with my milk. I actually carried her into the operating room and held her in a ricking chair while they put her to sleep and they called me in while she woke up so she never even knew I was gone.
The hardest parts for me with the surgery are the cuffs she had to wear and the face brace she had. The cuffs were from her wrists to her arm pits. She had to wear them for 2-3 weeks so that she wouldn't touch her mouth. The face brace was a little rainbow arched shaped piece of metal that they taped over the mouth to keep things from bumping into it. As it healed they took it off and put tape over the stitches.
The process is emotional and you feel helpless BUT rest assured your child won't remember the surgeries. My daughter looks at her baby pics and makes a funny face because she doesn't recognize herself. I'll send you pics if you want, she's 4 now.
The only aftermath we had was a severe fear of doctors. This past year she has grown leaps and bounds and children who haven't gone through surgeries still have this fear so it may be unrelated.
Best of luck! Let your sister know that everything is going to be great and children are resilient and surgeons can do miracles. Don't stress!!

my son was born with a cleft palate (the back of the mouth). a cleft lip means that the baby has a cleft from the back to the front most likely. my son couldn't breastfeed because he didn't have the ability to suck strongly enough. I pumped for 8 months so he could still have breast milk. After his surgery I stopped, but I was glad he had breast milk for the recovery. there are many surgeons out there, but only few who know how to do an excellent job with clefts. if you can get a hold of Dr. Jack Yu at MCG in Georgia, he is amazing and he uses a special technique that few doctors know how to do. he could at least recommend someone in your area that may know how to do surgery the best way. his email address is ____@____.com . I'm sure he would be willing to answer basic questions as well, or at least refer you to a great source.

We have a son that had a lot of feeding problems, and now speech. When I was doing my research, I found a lot on cleft lip, and ordered from several of the websites. They had a lot of information easily accessible with lots of links and groups available. I'm sure if you Google it, you could get a lot. I didn't look to see where you are, but most Children's hospitals would have a lot of information, too.

Hi K.,
My sister in law has a very strong hereditary cleft lip line through her fathers side of the family. And I have learned that each cleft lip can be very different. Some can be very minor and some can be very extreme. Some can be corrected with only one surgery and some may have to have frequent surgeries throughout their entire adolecent life and possibly one in their adult life. My niece and sister in law both have cleft lips. My sister in law only had two surgeries as hers wasn't as major. But my niece will need to have several surgeries and extensive dental work, her cleft included her entire top palete of her mouth and her teeth will need to be made. I could go into greater detail but I'm sure you dont want me to write you a book. LOL Basically every cleft is different and there is alot more support and advances in todays medical industry. So rest assured that no matter what the outcome it can most likely be corrected. And the baby will be beautiful no matter what!!! You can email me if you have more questions...I hope this helps.

This is hard, but it's going to be OK.
Current surgical techniques are so excellent that scarring and asymmetry is kept to an almost-invisible minimum. Because Baby will need a couple of surgeries in his first year, mom should consider reading up on ways to feed him breastmilk-- it has so many antibacterial properties and gasterointersinal-soothing qualities and those will both be vital for a baby who needs surgeries. Also, babies with clefts are prone to more ear infections because the tubes going from the back of the nose to the inner ears may not function properly. In "The Breastfeeding Answer Book," which is La Leche League's medical text, is says, "The muscles of the palate normally open the ear tubes during swallowing to equalize ear pressure. When these do not function adequately, fluid can accumulate in the middle ear and may become infected. In a study on babies with cleft defects, those on formula developed more ear infections than those receiving some human milk. The immunities in human milk provide protection against all kinds of infections, which is especially important when a baby is facing surgery." Babies can nurse or receive human milk within three hours of surgery, even when other foods and fluids are restricted, because it is so easily digested. This will help both mom and baby feel more at ease when they are facing surgeries.
Anything Mom can do to reduce the chance of infection is so, so valuable, and will also help her feel more connected to him even when medical staff must help with his care.
If the cleft is only in the lip and is unilateral (one side only), mom may be able to help baby maintain suction at the breast by positioning the nipple to one side of the cleft and using her thumb to fill in the space above his upper lip. An IBCLC-certified lactation consultant can demonstrate the "dancer's hand" position which can help support Baby's jaw and chin, if needed.
If the palate is involved, which is likely, he will probably not be able to maintain a proper latch to breastfeed. Feeding can take longer than with a typical baby. It will probably take most of Baby's waking hours to feed him during the first few weeks. If mom is prepared for this and well-supported, it can be a sweet, bonding time. If she is worried about other children or preparing meals and doing chores for herself and other family members, she may feel discouraged and frazzled. Extra help is nice for all moms, but an absolute necessity for a mom who is helping a baby who has a cleft. If she will be having a baby shower or blessingway party, consider having a sign-up sheet or calendar so people can volunteer to help with meals or laundry, and make sure Dad knows his help will be needed a lot.
Consider using a Breck or Haberman feeder or other device that does not depend on suction to offer milk--a Haberman will not "flood" a baby, which would cause a baby with a cleft to choke and cough and get frustrated and not get enough.
Many surgeons will install a palatal obturator. It's a plastic plate that is placed over the opening of the palate and shaped to cover it. Obturators are used before palate surgery to close the gap but prevent the baby's hard palate from closing in an improper way. It may be fitted as early as 24 horus after birth or several weeks after birth. Baby's mom should tell the baby's plastic surgeon she would prefer a smooth (rather than a rough) palatal obturator to faciliate comfortable breastfeeding. Later speech develpment is greatly aided by helping the baby develop normal sucking patterns.
Mom will probably need an excellent breast pump to establish and maintain her milk supply. A hospital-grade rental pump will be the most effective option. This would be a great group gift for friend and family to chip-in on.
Finally, it's nice to have a few cute clothes and/or booties and hats for mom and dad to enjoy putting on baby. That's true for all babies, but especially true for babies with any kind of atypical physical appearance; parents need every opportunity to see their babies as the darlings they are so they have positive feelings towards their babies and can support and comfort them well through surgeries and/or feeding challenges. It can be useful to have some baby gowns that are open at the bottom (as opposed to footed) so if medical staff needs to attach monitors to Baby, his feet and tummy can be easily accessed.
Please consider reading more about cleft issues at www.llli.org. That's La Leche League's main site, and it will have many helpful and positive stories from mothers who have been through this. Consider contacting your local LLL Leader for support and information both before and after Baby arrives, and also consider making an appointment (even before Baby comes) with an IBCLC-certified lactation consultant. There will likely be at least one on staff at a hospital; part of their training specifically relates to helping mothers whose babies need extra help. An IBCLC-certified lactation consultant at the hospital where Baby's surgeries will be performed are likely to have cleft-specific experience.
If you'd like to send a small gift, consider the booklets "Nursing Your Baby with a Cleft Palate or Cleft Lip" by S. Danner and E. Cerutti and "Give Us a Little Time: How Babies with a Cleft Lip or Cleft Palate Can Be Breastfed" by C. Herzog-Isler and K. Honigmann. I know the second one is available from LLL online; I could try to help you find the first one if it is not easily available from LLL online. These booklets have many photos of babies before and after surgeries, which can be both comforting and disconcerting for parents. Still, I recommend then because they show these babies first and foremost as babies like any others who are ready to love and connect with their families and need lots of support to get through their difficulties.
My sincerest best wishes to you, your sister's family, and your darling nephew, who will probably amaze us all at what a tough but sweet cookie he is. What a great, supportive auntie you are!

Hi K.! I too, found out that my child was going to have a cleft before he was born. It was devastating at first. Lost of support and assurance that the doctors are AMAZING will be needed. Plus, it was very helpful to us to visit the cleft clinic and the children's hospital before he was born to find out procedures and options for our family. The usual time for the surgery is at 3 months, but much depends on the weight of the child. Here in Denver the children's hosiptal is AMAZING, but can't speak for Portland. The WORST thing we did was start looking at pictures on the internet and seeing all the worst case scenarios. It was very difficult as the untrasound was unable to tell the the exact extent of the cleft. They said 99% chance that the palate ( I STILL cannot spell that word!!) was involved. We prayed and prayed and turns out, it was not. We are very grateful for that. Either way, there are bottles to help a child to eat better, and all kinds of help out there for families to cope with this. I would encourage her to make an appointment with the hosital ASAP as they were wonderful to help ease the fear and help with what we were to expect. He/she will be beautiful anyway, and we actaully missed the cleft after it was fixed! :) PLEASE let me know if I can answer any further questions!!

Belinda

Encourage your sister to consider breastfeeding, even if she hadn't planned to before. It may not seem logical: cleft lip and/or palate may make it more challenging to breastfeed physically (tho' not impossible!), at the same time it is even more important that the baby have her milk.

Babies with a cleft are more vulnerable to aspiration, respiratory infections and ear infections than other babies. Breastmilk is a species-specific physiologic fluid which is less irritating to baby's mucosa if it does get in the wrong place, and carries many immune properties to more fully protect baby from viruses, bacteria and parasites.

Even if she can't provide milk for some reason, I believe there is a milk bank in Portland: the Northwest Mother's Milk Bank.

S.