On June 16th we met with a plastic surgeon at the hospital. It was a very informative and interesting appointment, and I think we felt much more educated after speaking to someone that performs the cleft surgery. We still feel a long ways off from grasping the whole scheme of what's to come, but I will try and give the best overview that I can!
First of all, we are talking about a baby and a cleft before we've actually SEEN the baby. I have to keep reminding myself that we don't really know what the extent of the cleft lip/palate damage will be.
Here's is what I took away from our meeting with the surgeon. First of all, there are many, many, MANY different factors that can present themselves with a cleft baby. The cleft palate can affect feeding, hearing, breathing and more and there can be a long series of corrections throughout the child's life - up through their teens and sometimes beyond into adulthood. Up until this meeting with the surgeon I had really only focused on the first year or so - basically the initial lip and palate surgeries.
So, here's a briefing on what we can expect:
The surgeon would likely come visit us and evaluate the baby in the hospital or we would meet with him very soon after the baby arrives. Our immediate concern will be feeding. Lactation specialists at the hospital would help us address any immediate feeding needs. Plan (A) - to breastfeed. Plan (B) - anything that works. There at the hospital we will have access to many different types of bottles and nipples that we can try. If the palate is affected, the baby may have trouble gaining suction, making it nearly impossible to nurse, and even tough to use standard bottles. They need easy-flowing bottle nipples and perhaps even extended nipples so that the milk doesn't go up into the nose, so the opening sits back further in their mouth (from what I understand).
The cleft will be evaluated to determine the baby's individual needs, but typically the surgeon will start some taping for the lip soon after baby is here, to help stretch the skin of the lip and prepare it for surgery, which is done around 3 months. There will be a hospital stay involved and what I describe as extensive surgery for a wee little one (under general anesthesia). It typically takes up to 6 weeks for the healing to be complete, and we are to expect some scarring. It can take up to a year for the lip to gain full flexibility and for the skin to become soft and natural feeling.
Around a year of age, our child would get the palate surgery done, if necessary. They may also recommend that baby gets tubes put into the ears, as there is a lot of fluid that can get into the ear canal. They try and do these at the same time so as not to put child under two more separate times. The baby teeth are generally growing in around this time, but they don't really tend to discuss fixing the teeth until permanent teeth are coming in.
If the nose or lip still needs adjustments (such as to correct an uneven nose structure), they usually will schedule them before the child goes to school. Then there is another possible surgery that can happen closer to age 8 to repair any gumline/bone damage affecting how the permanent teeth will grow in. Oral surgery, orthodontics and implant dentistry will be made available based on need. Once the child's face more fully develops (in his/her teens) another rhinoplasty surgery may be needed for cosmetic and/or breathing issues.
Here is some information through the Levine Children's Hospital site that I find helpful:
We think we are going to meet with another surgeon in the Charlotte area that does a lot of cleft work. The surgeon we met with already is certainly experienced, but he does more breast cancer related surgery and reconstruction. He seems to be an amazing surgeon, but we may go with someone that does cleft repairs more regularly. We are in this for the long haul and want to be 100% confident in our decision.
Whew, exhausted yet? I am. Overwhelmed? You have no idea!
The good thing? The cleft is FIXABLE. And we know that the child will be loved and adored for who he or she IS, and that is not based on the outside appearance (but c'mon, of course he or she will be ADORABLE!)
Still, scary. I just sit here and think about the next stretch of time, ranging from the next several weeks (I'm 35 weeks along in the pregnancy now)... to the next 20 years... to the rest of my child's life. I am anxious to make everything "right" and yet I know it's all out of my hands.
I worry about the psychological affects on my child. I never want my child feeling bad about him or herself and putting too much emphasis on looks. I know at some point in our lives we have all been plagued by some sort of image issue - I sure have. Who hasn't looked in the mirror and wanted to change something about yourself? We are never satisfied.
Much rests on a parents' shoulders to raise their child with the confidence and assurance that they are perfect just the way they are - despite their flaws or weaknesses. And we must instill these values in our children so that they can look at others with the same perspective.
Yep, this parenthood stuff really comes with a lifetime contract.
And we are prepared to fulfill it! :)
On another note, this Thursday, June 30th, we have an appointment with the specialist again to take a look at the baby's kidneys. Please keep baby in your thoughts and prayers. We are praying the one kidney looks remarkably better this time around!!!
