The Icky Stuff

After an email vent a friend suggested I share the icky stuff in my blog too. This is hard for me because I feel guilty enough having some of these thoughts let alone writing them down! Sticking to the facts is so much easier. I can see how the icky feelings are a part of our story too and how it may help others so as a way of easing into this the following is a combination of facts and feelings.

At 20 weeks we had the typical ultrasound you have around that time. The appointment went quick and everything was pretty normal. Bella, our 4 year old, was along and we were excited to get our first look at the baby and maybe even find out what we were having. A boy! We were thrilled! Bella demanded to know his name and we left the clinic calling friends and family with the fun news. The doctor followed up to let us know they weren't able to get a good picture of the four valves of his heart (this is common) so he advised us to go back in for another scan at 24 weeks.

At 24 weeks we had the follow-up scan. They don't tell you anything at the scan. The doctors review the images and then contact you with the results. Later that week the doctor called and left a message to let me know they had the results of the ultrasound. This wasn't a good sign because if all was well they would have just sent me a message electronically. Knowing this I was a little nervous to return the call. When I finally got a hold of the doctor she said the heart looked good but the scan indicated the baby may have a cleft lip. She assured me it was more common than people think and very fixable. Looking back, the tech that did the ultrasound did spend a lot of time on the baby's face but we thought she was just trying to get a good picture for us since we didn't get very good images at the first ultrasound. The doctor said we should have a level II ultrasound to get a better look. The news our baby may have a cleft lip came as a shock. You have this expectation that everything is going to be perfect and when you find out it isn't your whole reality shifts. I cried the first two days straight and just felt so sad. I wondered how this could happen, what I did wrong, etc.

At the level II ultrasound, when I was 25 weeks pregnant, we received the confirmation that our little boy does have a cleft lip and probably palate. At this point I had pretty much cried myself out and was just a little sad. After doing some initial research and reading about others who have been through this I felt a lot better. I tried to learn as much as I could about clefts and how others dealt with the same initial fears and concerns. It helped that we were keeping busy with research, doctor appointments, and making sure insurance would cover the doctor we wanted to use for his surgeries. I also started this blog and that kept me busy and gave me something to do. I felt so strong.

Now all we can do is wait. The reality of the situation is starting to wear on me and I am completely overwhelmed. I can't believe this is happening. Everything with Bella was just so perfect.  (It may be time to lay off the internet research!) I can't look at strangers (babies, children, adults) without trying to find other people with clefts. I look at every baby I see and wonder why my baby's lip didn't close. I am just plain mad. It doesn't seem fair that due to some fluke we have a whole other set of issues to deal with. I have fears about how people will respond to our baby at birth and throughout his life and am sad about all the surgeries he will have to go through.

Deep down I know everything will be fine but I have to acknowledge that there might be some bumps in the road.

What Treatment Might Look Like

When we met with the University of Minnesota cleft team the surgeon provided us with a general outline of what treatment might look like. It is important to note that treatment varies from doctor to doctor and also depends on the extent of the cleft.

The top difficulties faced by babies or children with clefts include feeding problems, ear and hearing problems, dental and speech problems.

After Baby is Born

• Bring baby in for initial appointment with surgeon as soon as possible

2-3 Months Old

• First surgery to bring lip and dental ridge together
• Prep for this surgery may include taping and molding

6 Months Old

• Functional surgery on lip

1 Year

• Surgery to close the palate

Next 2-3 Years

• Focus on speech and speech therapy
• Potential for surgery to correct speech issues

Preschool/Kindergarten

• Touch up surgery

8-9 Years Old

• Bone grafting
• Provides support for unerupted teeth and teeth next to the cleft
• Provides support for the lip and nose and to improve symmetry
• Forms a continuous upper gum (alveolar) ridge, creating a more natural appearance and stability to the ridge

Other

• Because ear infections are common the baby would probably have tubes put in during one of the other surgeries
• Additional surgeries may be needed
• Continued follow-up may be needed with speech therapists and orthodontists

As I said in an earlier post the team will follow him into adulthood. Mike and I both came away from this meeting feeling a little overwhelmed. There is more involved over a longer period of time than we thought.

Whatever it takes!

First Picture of Cleft

Here is a picture of our little boy's cleft. It may be hard to see but in the center of this image is his nose, lips and chin. If you are able to tell what you are looking at the cleft becomes pretty clear. I think he has his Daddy's chin!

Appointment with University of Minnesota cleft team

Last Friday we met with a couple members of the University of Minnesota cleft team including the team coordinator and plastic surgeon. We were able to get a lot of information and some idea of what the plan for treatment might look like. When he is born and the doctors can get a better look at the cleft they will know more. They are also recommending we do a 3D ultrasound.

I am really liking this whole team approach thing! A team of surgical, medical, dental, speech and hearing professionals will ensure our baby receives the most effective, efficient and cost-saving treatment. Did I mention how awesome it is to also have a coordinator to help us manage everything?! She helps us with appointments, dealing with insurance, and will even come to the hospital when the baby is born to help us with our first hurdle, feeding. The plastic surgeon would like to see the baby as soon as possible after birth. Probably within a week or two so as soon as we are up to getting out and about we will be there.

The team would continue to monitor our baby until he is 21 years old!

As you can imagine...

As you can imagine the news that our baby will have a cleft came as quite a shock. Last week we had an ultrasound that indicated the baby may have a cleft lip. On Tuesday we had a level two ultrasound that confirmed he does have a unilateral cleft lip and probably palate. The extent of the cleft will not be known until he is born. The good news is they did a head to toe scan (we literally saw each finger and toe) and he is healthy.

It is really important for people to know that the cleft doesn't hurt him in any way. He will just look a little different. He will have his first surgery 2-3 months after he is born to correct the lip and will probably need additional surgeries down the road.

The doctor who met with us at Maple Grove Hospital after the ultrasound on Tuesday has connected us with the coordinator for the Fetal Diagnosis and Treatment Center. She has provided us with cleft information, resources and information on cleft teams in Minnesota. The first team we plan to meet with is from the University of Minnesota. This meeting is on Friday. From there we can decide if we want to interview more teams/doctors. 

Last Thursday and Friday when we first got the news were the hardest. The confirmation on Tuesday was just a little sad. Reading information online and blogs and discussion boards of other people who have been through this has really helped.

I want to thank all of our family and friends for your support during this time.

Can't wait to meet this little guy in October!

Our Cleft Story

I have started this blog as a way of sharing our cleft journey with family and friends. I will continue to add to this page as we find out more and as our little boy's story progresses.

What is a cleft?

A cleft of the lip and/or palate occurs very early in pregnancy. The face and head form from back to front, normally meeting in the middle and forming the two lines under the nose and the raised ridge running down the center of the palate as they fuse. If the timing is off for some reason, the lip and/or the palate fail to fuse completely, and the resulting gap is the cleft. So far we know our baby has a unilateral cleft lip and probably palate.

 

What causes a cleft? Is it genetic or environmental, or just random?

The causes of clefting are only partially understood. In some cases it runs in families, and some ethnic groups have a higher incidence of clefting, but most of the time there is no family history and no connection to any other health problems. There are also some environmental factors which can increase the risk, such as maternal smoking, certain medications and high exposure to pesticides, but again most of the time it is just a random thing.

Clefts are the most common birth defect, affecting one in every 600 births in the U.S. Many of us know people affected by clefts, but most of the time don't realize it because of the wonderful success of repairs, which are performed so early most of us have never seen an unrepaired cleft lip.

 

Helpful resources:

The resource I think has the most helpful and accurate information is the Cleft Palate Foundation (which has information about both cleft lip and cleft palate):
http://www.cleftline.org/  

They have lots of information on there, but if you are looking for a place to start on their website, I would recommend their basic facts sheet:
http://cleftline.org/docs/PDF_Factsheets/For_Parents_of_Newborns.pdf