Unborn granddaughter with cleft

[Cowboy Dave]

Hi All,

New to this topic. I was just told by my son his daughter was going to be born with a cleft palate. After some research I found this site and have learned so much in a short period of time.

I really don't know where to start. So many issues and problems for a child to start their life. Thanks for this site. I would welcome any advice from others who have dealt with this. Now all I can focus on is the suffering my granddaughter is going to have to endure due to surgeries.

Thanks,
David

[gregory]

Dave,

Congratulations to your son for expecting a baby girl.

I'd say that I am glad you were able to identify the condition this early. In my son's case, I was caught by surprise and completely unprepared. He was born with Pierre Robin Sequence, a condition which among other pathological issues encompasses a cleft palate.

My suggestion is that you locate your nearest Children's Hospital and come in contact with a Surgical Coordinator. They will immediately provide you with details about the cleft palate condition, schedule necessary appointments, coordinate meetings with the Neonatal Craniofacial Surgeon, and guide you through this procedure.

Now, there are different opinions about when the operation needs to take place. In the past, surgeons suggested to wait 3-6 and in some cases 8 months. My son was operated at the Children's Hospital of the Kings Daughters (CHKD) in Norfolk, VA by Dr. William P. Magee, co-founder of Operation Smile. Among many advocates, he supports the method of Early Intervention. Dr. Magee operated on my son on his fourth day of age. Expectantly, the results were quick and remarkable. The corrective surgery left nothing but a few faint memories.

Our story is available at: http://www.cleft.org/families/theodoros.htm

I am certain that your granddaughter will be a bundle of joy.

Good luck and God bless

Gregory
(11yoB, PRS)

[Linda S S]

Welcome to the list. I have a niece with unilateral cleft lip. We did not know until she was born. Foundation for Faces of Children provides a free video "Understanding Cleft Lip and Palate--A Guide for New Parents". You may contact them at
info@facesofchildren.org .

[jacksmom]

Congratulations on your new grandaughter! Your family is blessed to have this news before her arrival so that you can be equipped with all of the necessary info. My 18 month old son was born with a cleft that was a complete surprise, and the first few weeks were rough! I know this seems like devastating news, but there are far worse things than having a cleft. There will definitely be some issues the first year. Feeding is the first concern. I would recommend your son finding the cleft surgeons in your area and meeting with them before the baby's arrival. They can take a look at he ultrasound pictures, and give them a better idea about what to expect, and equip them with some of the different types of feeders used for cleft babies. Our experience was that the hospital where I delivered, did not have them readily available. There is a wide range of when clefts are repaired, depending on the surgeon. Jackson's was repaired at nine months. Before the repair, our only real problems were reflux and some fluid on the ears. He got tubes placed (in his ears) at 12 weeks and we haven't had trouble since then. Tell your son and daughter in law to relax and enjoy the rest of their pregnancy. There will be plenty of time to worry later! This website is a great resource and a great support group! Everyone has been so helpful for us this past year! Please let your son know that they may feel free to contact me with any questions/concerns they may have. Enjoy your precious new little girl! I'm sure she will b spoiled rotten by a loving grandpa!
Allison S.

[Cowboy Dave]

Thanks all for words of encouragement.

David

[mrobida]

Congrats and best wishes to your family. Like others have said, it is nice to know ahead of time in order to prepare. We did not find out until a little after our daughter's birth. The nurses couldn't find the right feeder right away and fed her by syringe, so it is nice to be able to have all of that stuff set beforehand. Also, it will be nice if they can find out if the baby will have any associated chromosomal syndromes as we went through two tough time periods worrying about that, first at birth and then again 3 1/2 months later until she was finally tested and found to have no other disorders.
As far as dealing with the cleft, it has been a little tougher, just because of the feeding issues and reflux. Otherwise, she's the same as any other baby and very sweet and a good baby. I also have a two year old and no other close relatives so at times I have my hands full, just like any other mother of two kids!
As for the surgery, I know it is only natural to worry about any kind of surgery and pain. But my husband and I are greatly anticipating our daughter's surgery because we feel that everything will be much less of a struggle once it is over. It seems from everyone's comments that the healing is quick, with life back to normal in a few short weeks. The doctors assure us that it's more painful for the parents than the children.
I have found these message boards to be a great source of advice and a great place to hear how others have tackled different issues in caring for a cleft baby/child. And it's also great to just read and know that others are going through the same things as you.
Best wishes to you and the rest of your family and a healthy birth of your granddaughter!

Michelle