Our son was born with a bilateral cleft lip and palate (BCLP) and has been in speech therapy since he was 18 months of age. I value private speech therapy and we are faithful in keeping our weekly appointments, incorporating speech techniques at home to gain consistency and working on a great deal of repetition.
It’s just that at this point we have now added orthodontic appointments to our ‘have to’ weekly list and he has a palatal expander and permanent bar on the bottom. We’ve been told that his cleft will temporarily widen due to the palatal expander and that his speech intelligibility is going to degrade because of the widening cleft and cumbersome contraption in the roof of his mouth. All of which we are currently witnessing.
This kid has weekly speech and reading therapy already and now we have added orthodontic appointments! His therapist believes that there is value in continuing speech therapy and that other things can be worked on while suffering through the changes taking place due to Phase 1 of his orthodontic treatment.
My husband and I have been seriously discussing our options and are leaning towards giving speech therapy a break. His speech is not going to improve while undergoing orthodontic treatment in preparation for his bone graft surgery, so why not give him a break? It’s not forever and they are estimating that he is going to need the bone graft in 6-9 months. Speech therapy can resume after healing from the bone graft.
Has anyone else gone through this and found value in continuing speech therapy while undergoing orthodontic treatment? Did you take a break and regret it? Or was it a much needed break for your cleft kiddo that allowed them to just deal with the ortho stuff? We have a lot to consider and once we make a final decision I will post an update. Any input or feedback, even from a therapist’s point of view, is welcome!
As with any child you are going to worry about their development, but especially so when your child is already facing challenges due to their being cleft affected. Your child’s hearing is going to be another ongoing aspect of care you are going to need to be diligent about, which is why an ENT is an integral part of your Cleft Palate Team.
Our son showed signs of hearing loss as early as 2 mos. of age when we first noticed that he was not responding to our dog barking, the telephone ringing or loud knocks at the door. It was determined that he had fluid build up in the middle ear directly related to the cleft palate. He received his first set of PE tubes at 3 mos. of age during his cleft lip repair surgery. The ENT informed us that he had cleaned his ears out and immediately the fluid began draining after the placement of the PE tubes. When we brought him home there was a marked difference in his hearing and we were relieved to hear him cry when the dog barking startled him!
Over time his PE tubes would begin to fall out and we would experience a fussy baby showing signs of an impending ear infection. He would rub his ears, have a slight fever, want to be held all the time (that one wasn’t so bad) and just did not feel right. Another trip to the doctor’s office would confirm what we already knew and antibiotics would be prescribed. Sometimes the antibiotics worked but as a long term solution they just did not; and it was back to the ENT to schedule another PE tube surgery so that we could clear up the infection and quell our fears of hearing loss.
The ENT would do a hearing test before and after his PE tube surgeries and it was always a little scary during the pre-surgical hearing test because you could obviously see the hearing loss while his ears had fluid build up. I would feel a pit in my stomach up until after the surgery when they redid the hearing test and we could see that he was responding once again to both low and high frequency sounds.
The first 5 years of our son’s life were a constant battle with his ears. His tubes would last about 10 mos. before they started to fall out. During that grace period of no infections we were grateful (except when he caught a cold) because undoubtedly that meant an ear infection. His ears just seemed to be such a weak point for him.
I suggest you remain vigilant in your child’s care and make sure to see your ENT at every cleft clinic visit to make sure the tubes are still in and working properly and that there is no fluid build up. Be sure to request a hearing test if your ENT has not already suggested one so that you can have a baseline for your child’s hearing progress throughout their surgical journey.
For further reading on how we protect our son’s ears now that he no longer has PE tubes please see my following blog posts and reference material available:
At this point we have been making great strides in our development. Gavin recovered from his lip repair surgery fairly quickly and we continued on as any other family. There was tummy time, he began rolling over, pulling himself up and before we knew it he was coming up on 10 months of age. His cleft palate repair surgery had already been scheduled and we knew of our countdown date.
This surgery (cleft palate repair) was going to be quite a bit tougher in some ways than his lip repair. First, we knew that he was not a tiny infant and would understand in some ways more of the pain he was feeling than he did back then. Secondly, this repair was the entire roof of his mouth extending to the back of his throat so there was going to be a great deal more pain and swelling, discomfort in a way we would not be able to understand or that he would be able to convey, and recovery was going to be longer.
Some of the things we did to prepare for surgery was to just spend as much time with him as possible enjoying all of the little things. We set up a Dedication Ceremony through Church for just our family as I wanted to make sure that he had that prior to this next surgery. As parents we were still very worried about him going under anesthesia and it helped us as parents to know that he was dedicated and that he had his cross blessed that he could take with him on his stuffed animal into surgery. He had this puppy with different colors on it and when you pushed its paws or feet it would talk or sing to you. He loved that puppy and his doctor and nurse told us he could take that with him into surgery so I pinned his cross to the puppy so that it was near.
I continued to pump and store breast milk for the surgery. We knew that as long as we kept him on breast milk he could drink almost right up to the surgery. We felt that making sure he had a full belly would make him feel better when he woke up after surgery and our surgeon let us know that she believed breast milk really did help to heal the palate much more quickly. Not only that but stomach issues were usually less with breastfed babies so the less he spit up the better while he was healing.
In between the recovery from his lip repair and up until his 10 month palate repair we had spoken to his surgeon and pediatrician about vaccines. We wanted to make sure that his immune system was not compromised in any way and that he was as healthy as he could be for surgery. We put our son on a very delayed vaccination schedule allowing him to only have 1 vaccine per visit. More about this in another post!
Another long night of packing and not sleeping happened for us. We knew this surgery was going to be more difficult in some ways than the first surgery he had at 3 mos. The surgery was going to be longer and he was older now and would understand that he was being carted away from us. Our stay in the hospital was going to be longer due to the extent of this surgery and he was going to be in a great deal more pain because of the entire roof of his mouth being repaired. This definitely had us all in knots.
Once again we found ourselves on the 405 at 4:30 a.m. and we were pretty tense with worry. Same deal as the first surgery. We checked in and they got us to our waiting room where we changed him into his surgical gown and began pacing with him in our arms. Since he was older for this surgery the nurse came in prior to surgery and gave him some medicine that made him pretty loopy. They told us it would make him less likely to cry when it was time to be taken from us and more relaxed for the anesthesiologist. I don’t know if this information made us feel better or worse.
Palate surgery lasted quite a bit longer than the lip repair surgery and we were stressed the entire time. Recovery was much more difficult this time around. He was really upset coming out of the anesthesia and had this awful cry that sounded really hoarse. His surgeon told us it was from all of the tubes and that his vocal chords were irritated and he would sound hoarse for a few days. There was also blood that was coming out of his mouth and nose so we had to keep burp rags and towels on our shoulders and anywhere else that was handy. This stopped after a few hours but you could just tell how uncomfortable he was. They had him on a mixture of Tylenol with Codeine for pain management but I felt like I might need something as well, only stronger!
We spent a restless night in the hospital with check ups hourly and a lot of rocking and singing to keep him calm so that he could sleep and heal. This night was by far the toughest and both my husband and I felt as if we would drop from the sheer stress of it all. The following day he woke up and seemed to be feeling slightly better. He seemed more alert and actually wanted to try and eat. We had a sippy cup with the valve taken out with us that our surgeon had suggested we bring. We warmed up some breast milk and put that in the sippy cup for him. We were able to help pour that into his mouth a little at a time and he actually seemed to feel better afterwards. We were so scared trying to feed him like this. He already looked in pain and we didn’t want him to feel frustrated about getting his belly full. Getting through this first feeding we felt apprehensive but by the end we all seemed to get the hang of it and our little guy looked a little better.
Our surgeon came to check on him and after witnessing him getting the breast milk from the sippy cup a few more times and feeling satisfied with how he was doing she discharged us later that day. They kept him on the Tylenol with Codeine while there but she let us know that if he was doing okay during the day we could keep him on regular Tylenol and supplement the Tylenol with Codeine at night to help him sleep.
I am amazed at how quickly our son was recovering from such a major surgery. He was eager to eat and after just a few days at home he was crawling around with his arm splints on and was babbling. His frog like voice began to disappear and if you didn’t know him, to look at him you simply would not know that he’d had a cleft palate surgery only days before.
Children really do recover much more quickly than adults. This surgery was a difficult one and obviously much more involved, but as a family we got through it. Our immediate family around us made sure we were fed and stopped by to check in on us, fill prescriptions or grab things from the grocery store. We are lucky to have so much help and love surrounding us during our times of need. Do not be afraid to ask for help! If ever there was a time to do so, it is while you are worrying about your little one.
Early speech intervention will make a difference in your child’s development and progress with regards to his ability to communicate effectively. Having a multi-disciplinary approach to our son’s care through the Cleft Palate Center has been a crucial part of his development over the years and especially in the beginning stages for his speech development because we had all of our resources in one place.
I remember thinking that the suggestion for him to begin speech therapy as soon as he started babbling seemed a wee bit aggressive. However, after speaking with his team therapist about my concerns and the reasons why starting speech therapy so early on were suggested, we decided to give it a try. Eventually, we were able to see for ourselves the difference it made.
Due to our son’s cleft palate and his inability to suck properly, his intraoral muscles were underdeveloped. He started speech therapy at 17 mos. of age. I would sit in the observation room watching the therapist and the techniques she was using with him. As a toddler he was pretty busy moving about the room, checking out all of the new toys, and seemed to drift from one activity to another pretty quickly. His therapist figured out what would engage him and became a true friend to him. He still mistakenly refers to his current therapist as “Becca” from time to time. 🙂
I recommend developing a good relationship with your team members because being involved in your child’s care is crucial to carrying over the techniques at home and incorporating their methods into your daily routine, thus having consistency and seeing overall improvement.
One technique our therapist shared with us was to simply practice blowing bubbles at home. As simple as that sounds for you and me, I promise you it is not so simple for your cleft affected child. It was a frustrating experience for both of us, but we kept at it and the moment your child is finally able to blow bubbles is one you most assuredly will not forget.
We had several small bottles of bubbles at home and periodically throughout our day we would venture outside and try to play with them. Our son was pretty frustrated because he couldn’t get any bubbles to form and I got to see first hand that he was in fact blowing through his nose and nothing was happening for him on the bubble front. When he would let me I would gently pinch his nostrils and have him try, which began resulting in some bubbles forming. This was a great confidence booster and got him to want to keep trying. I would catch him pinching his own nose and trying to blow bubbles. Sometimes it would work and sometimes it would not. I purchased one of those swim nose clips at Walgreens and decided to see if that could help him at home. He was resistant at first but after a bit he would let me put it on and when he saw that he could actually blow bubbles better with it he began pointing to it for me to put on him when we would practice “bubbles” in the backyard.
Blowing bubbles and pinching his nose helped him to distinguish between blowing through his nostrils and redirecting the airflow through his mouth. It took awhile but eventually he did catch on. We would then try bubbles without the clip or pinching of his nostrils and he seemed to get stronger and better the more often we did the bubble game. It was rewarding for both of us to work on this at home and go back to therapy with a marked improvement to share with his therapist.
Another fun way to work on his air flow and to strengthen his intraoral muscles was to play a game where we would take cotton balls and put them on the dining room table or any flat surface and use straws to blow the cotton balls around. We would set the cotton balls at one end of the table and both of us would blow through the straw trying to move our cotton balls to the other end of the table first. Again, this was frustrating and a lot of air was escaping through his nose and not the end of the straw but making sure that he kept at it was key. He would pinch his nostrils and see the difference in getting those cotton balls moving and get so excited! This is definitely a game you want to play interactively with your child and I recommend you do not leave them alone with cotton balls and straws. Toddlers like to put everything in their mouths, nose, ears, etc. so playing this with them is important. Do not leave them unsupervised.
I especially liked this suggestion from our therapist and that was to make freezer pops at home and let our son have them throughout the day. As simple as this sounds, and it is simple for a typical child not dealing with a cleft palate, it is another activity that can help them to strengthen their intraoral muscles. For you or I this task doesn’t seem all that involved but consider your cleft affected child. Having to use their tongue to really get at that freezer pop is work and the more work the stronger and better they get at it.
I didn’t want to buy sugary pops for him so I would take fruit, fruit juice and unflavored Greek yogurt and make my own freezer pops for him. If I didn’t have any of these on hand I would simply take orange juice and fill the molds, which he liked just as well. It doesn’t need to be complicated or expensive. These were fun treats and unbeknownst to him an activity we were incorporating into his therapy.
These are just some of the techniques we used to crossover therapy at home and I’m sure your therapist will have some more fun, creative and interactive ideas tailored to your child’s needs and interests that will work for you and your family.
If you are considering whether or not to begin therapy at an early age, I recommend it. It helped our son tremendously. I believe that taking what we learned during therapy and working at home with him was an invaluable learning tool for all of us.
Probiotics have been incorporated into my family’s daily regimen and defense of our immune systems. I first became seriously interested in probiotics after my cleft affected son suffered from chronic ear infections and was on antibiotics more than he was off of them in the first few years of his life. His pediatrician brought to our attention that our son might begin experiencing GI (gastrointestinal) issues due to his gut flora being wiped out time and time again.
Again, I found myself researching and gathering information on probiotics, different strains, the best ones that would help to recolonize my son’s gut, etc. Through my research I found that using many different products and inserting a variety of probiotic strains, as well as enzymes was going to be the best approach for us in rebuilding his gut flora and immune system.
Imagine my surprise when I came across information relating to the dental health of cleft affected children through the use of probiotics! Below is an excerpt from a study The Cleft Palate – Craniofacial Journal published. You can read the full article at (http://cpcjournal.org/doi/full/10.1597/12-243).
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The Cleft Palate–Craniofacial Journal—Poor oral hygiene and higher incidence of tooth decay are often prevalent in people with cleft lip and palate. Food supplements containing probiotic bacteria can help reduce the incidence and severity of dental caries.
The Cleft Palate–Craniofacial Journal presents a study of 30 adolescents with cleft lip and palate analyzing the effects of probiotics on oral health. Fifteen subjects in the intervention group drank a probiotic milk powder containing Lactobacillus paracasei SD1 for 4 weeks while 15 subjects in the control group were given milk without a probiotic. Levels of salivary mutans streptococci and lactobacilli were measured at the start of the study and once a week for 4 weeks after use of the probiotic concluded.
For adolescents with cleft lip and palate, orthodontic treatment is usually necessary because of irregularities in tooth size, malalignment of teeth, or skeletal abnormalities. However, fixed and removable orthodontic appliances that help correct problems facilitate the colonization of bacteria such as mutans streptococci. This increases the negative impact of orthodontics for caries-susceptible patients.
Live microbial food supplements can help to stimulate natural immunity to infection and balance microflora. Use of the probiotic bacteria Lactobacillus can positively affect the oral cavity. Lactobacillus paracasei SD1 has been shown to have strong inhibitory effects against Streptococcus mutans, making it a good choice as an oral probiotic.
In the study, counts of mutans streptococci, which promote tooth decay, were significantly reduced among those patients who used the probiotic. Likewise, the good bacteria, lactobacilli, showed significant increases among the intervention group. In addition, Lactobacillus paracasei SD1 were still detected up to 4 weeks after active usage of the probiotic.
The Lactobacillus paracasei SD1 milk powder appeared to successfully colonize the oral cavity among this group of orthodontically treated cleft lip and palate patients. It was found to be safe and effective for oral use. Further long-term study of its beneficial effects should be undertaken.
About The Cleft Palate–Craniofacial Journal
The Cleft Palate–Craniofacial Journal is an international, interdisciplinary journal reporting on clinical and research activities in cleft lip/palate and other craniofacial anomalies, together with research in related laboratory sciences. It is the official publication of the American Cleft Palate–Craniofacial Association (ACPA). For more information, visit http://www.acpa-cpf.org/.
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If you are thinking of incorporating probiotics into your daily regimen for your cleft affected child you have two things to consider now when weighing this option and deciding for yourself if its good for your family. Probiotics help to build an immune system from overuse of antibiotics due to chronic ear infections and can help to prevent tooth decay and impact the oral cavity by having a high incidence of good bacteria versus bad.
We were only looking into probiotics to recolonize his gut and found along the way that there is an even greater impact potential on his health with their use. I encourage you to continue your research, talk to your pediatrician and make a truly informed decision when deciding whether or not to incorporate probiotics into your family’s regimen for health.
One of the not so fun highlights of post surgery care for your cleft affected child will be to have them wear the dreaded arm splints.They slip on the arms over their sleeves and are adjusted with Velcro closures.
At 3 months after his lip repair surgery it wasn’t so bad having the arm splints on because it kept him from being able to reach up to his face and suck on his fingers or hit himself in the face. He didn’t much fuss about it because he was so little. At the 10 mos. mark post palate surgery was a completely different story. He was crawling around at this point and pulling himself up on the furniture so arm splints were really in his way and he was not having it.
Our crafty 10 mos. old would rub his arm splint on a door jamb or furniture and get the Velcro strips to come loose and he would then wing his arm around until it flew off and then he had a fabulously free hand to simply grab the Velcro closures on the other splint and rip that one off as well. His palate was healing but we needed to keep him from putting toys or anything else in his own mouth that could injure the stitches or hurt him in anyway. As you well know, infants love to put absolutely everything in their mouth and with just having had the palate surgery we needed to make absolutely certain that didn’t happen!
Our surgeon suggested that we take tube socks, cut the foot portion off and put the sleeved portion over his arm splints so that the Velcro was covered and he wouldn’t be able to manipulate it anymore with furniture or the corner of a wall, as was his case. Genius! This worked like a charm and after a great deal of frustration on our 10 mos. old’s part, he finally submitted and realized that those splints weren’t coming off, so he simply had to work around them. Work around them he did. He still crawled around, although very stiff armed. Nevertheless, he did it!
If you are struggling to find a way to keep those arm splints on, try the long sock thing and see if that doesn’t help you out. Maybe get some fun fuzzy ones or something outrageously colorful! We put a headband on our son to give him that overall sporty look. 🙂
Well, it finally happened. My cleft affected son came home from school and after asking him how his day was he told me it was a good day but…he was playing in the big play yard with the upper grades and an older boy came up to him and asked him “what is wrong with your lip?”
My heart stopped. I quite literally was not expecting this today and even though it has been something in the back of all of our minds it just hadn’t happened and I thought perhaps we might not even encounter such a situation. We got through Kindergarten without any questions from peers but he moved up to first grade and to the big play yard where there are all of the upper grade children and of course it was bound to happen, right?
I kept my cool while holding his hand and walking to our car. I asked him what he said to the boy. He told me that he said “nothing.” I’m like, you just stood there and said “nothing?” He said, “no mom, I told him nothing was wrong with my lip because there isn’t anything wrong with it, right?” I told him that he was right and that there is nothing wrong. I asked him if he told the boy he had surgery when he was a baby and he told me that he didn’t feel like telling the boy that because he didn’t know him very well and didn’t feel like telling him all about his surgery. He then proceeded to tell me about playing kickball and how he was in “green” all day in his classroom. I quietly listened to him ramble about his day while my stomach was in knots. I had more questions but I didn’t want to upset him. We got home and I asked him if I could ask him some questions about what happened with the boy asking him about his lip. He said that was “okay.”
I asked him if his feelings were hurt because of the question and he told me “no.” My son, so brave, so logical told me that it was no big deal. He knew he had surgery and he was fine with it. He said he didn’t think the boy was trying to be mean to him at all and that the boy was just asking him why his lip looked different than his own. He then hugged me and told me not to worry. Told me not to worry. Wow.
As a family we have been very honest with our son about his surgeries and have explained to him that he had a cleft lip and palate when he was born. We have shown him his baby pictures and shared with him stories of being in the NICU and the hospitals when he was little. We have never wanted him to feel shame or to feel like he needs to worry about his facial difference. Of course it has always been a worry that even though we feel this way in our family that outside of that he would not be met with the same attitude. Starting school was a worry, but then, nothing. So it happened. He was asked about his lip and he responded in the best way possible.
I cannot convey how proud I am of him and his ability to be so grown up and comfortable with his response in that situation. He is right. There is nothing wrong with his lip. I love that face of his and his fiendish smile. His personality shines through in all that he does. He has such a good time all the time. He pretends to be a Ninja Turtle practicing his “moves” in the backyard, which never fails to crack me up. He’s actually quite good with his sticks and swinging them around fighting the bad guys. He is a kid. He has had surgeries to repair his lip and palate, speech therapy since he started babbling and more doctor appointments in his young life than I have had up to this point in mine, and yet he does it all without complaint and with that million dollar smile. (literally I feel like that’s how much his smile has cost!)
He taught me to listen to my own advice. I needn’t worry about him. I will of course, but it seems like he’s got this.
Today we had our 6 month check up with his Cleft Palate Team at St. John’s. It was a long morning for all of us! Gavin was a champ though, as usual. He knows that everyone wants to look in his ears, his mouth and listen to him talk so he gets through all of their requests with minimal fuss.
I packed a bag with books he needs to practice reading, his therapy homework to work on and his school project. The Center had a volunteer dog that came to visit the kids and help to pass the time so in between playing with “Mike” the black Labrador we were able to work on our therapy and homework getting quite a bit done. Daddy packed a snack bag so that got our little guy through lunch.
Not much has changed since our last check up. There was discussion of having his frenulum clipped, again. The speech pathologists believe it will give him more tongue movement and the team dentists believe that it will prevent the erosion of his gums behind his bottom teeth because of the constant pulling. The frenulum is the soft tissue that is attached to the underside of his tongue. His is fairly taut. He can stick his tongue out but not very far and because of the tension there, the tip of his tongue is pulled back giving him a “lizard” tongue, which he thinks is kinda cool. We do not want any unnecessary procedures so in the future should he need to have dental work done or another surgery then at that time they can clip the frenulum. At this time though we are opting to simply wait. His speech continues to improve so it’s not a “have to” situation.
His ears are still looking good with the one ear tube hanging on by a mere thread…still. For now we will continue on as planned with our reading and speech therapy. His team will wait for his dental age to progress and then we will begin planning out his alveolar repair surgery. Overall, it was a good check up and we got to visit with the nurses and he even got some playtime in with the other cleft affected kids there waiting on their team visits.
I appreciate these team visits that are uneventful. Makes me less anxious and we know we have some time before we have to start worrying about the next big surgery. In the meantime, we still have a lot of work to carry out but we are a work in progress and progress we are making!
After our little guy was born he was whisked away by doctors and nurses for tests, monitors and a quick exit to the NICU (Neonatal Intensive Care Unit). I had an epidural so I was not able to go to the NICU until the doctor gave me an all clear which meant 24 hours. Talk about highly irritated. I really wanted to see my baby and they wouldn’t let me out of my room until I could pee on my own. Seriously? I couldn’t feel my legs yet and wanted to just get wheeled on down there but it was a firm “no.”
My husband bailed on me pretty quickly as he was allowed to go to the NICU and see our son. He took pics of him on his phone and was really thoughtful in sharing those with me. Did I mention how incredibly hormonal, highly emotional and volatile I was feeling at not yet being able to see my son that I gave birth to? Yeah.
Finally the time came where I got to get wheeled on down to the NICU so that I could see and hold my son. My son. How odd is that? I have a son! Oh, he was sooo tiny and smelled so good. I cried. I just sat there in that wheelchair holding him and crying. He knew my voice and you could see him calm down as I was holding him. That made me feel like he too was waiting for me to get down to that NICU to see him.
Our son was in the NICU for 7 days total. I was discharged from the hospital the next day and that was hard. Leaving the maternity ward with my bags and my husband but without our son was surreal and not a moment I look on back on without cringing. We were both somber as it was just not what you picture after having a baby. We were empty handed and we felt a little lost. We got home and checked in on things, put our items away, showered and headed back to the hospital. It’s only 5 minutes from us so we felt lucky to be so close. I’m not sure the nurses felt the same.
My husband dragged the pump up and bags of snacks, bottled water, etc. to the NICU. We introduced ourselves to the nurses on duty, grabbed a rocking chair for me and another uncomfortable chair for my husband and planted ourselves next to our son’s “crib” in this very tight area. They had screens up to give us “privacy” and we worked with it. The nurses showed us how to feed him through the feeding tube with the breast milk I pumped. They had a refrigerator and a labeling system in place for us so that I could store the milk and they could feed it to him when we left. Everyone was helpful there. They checked on me and my husband as well as our son making sure we remembered to eat and drink. We would get to the hospital at about 7 a.m. and stay until almost midnight every day he was in there. My parents were a huge help because they took our daughter to and from school, made sure she was eating and would bring her to the hospital to stay a few hours with us. She would do her homework and help to feed and hold her brother. She wanted to know how to feed him through his feeding tube and she was quite good at it. He would just stare at her when she held him and she would giggle. These were good moments.
The first few days in the NICU are trying though. Lots of tests are being run to check for other syndromes or defects that may be present. I was assured this is all routine but it was still scary. We were just waiting to see if there was something else we needed to start worrying about. Every time a nurse or doctor came by to check on our son our hearts would skip a beat and we’d sort of stop breathing. No news was good news, right? I couldn’t take it anymore and so I went over to the doctor that was on duty that night and asked what the test results were for all of the tests he had been having. She looked perplexed and said that she thought someone had already talked to us. I almost fainted. I felt sick and told her that no one had said anything and we’re over here worried. She told me that all of the tests came back fine and that his cleft defect was isolated with no other syndromes or issues found. Relief. Except that I felt a little angry. Not at the information she just gave me but I really did not like the word defect as it was being used to describe my son.
Defect. I mean, it sounds like he is a part on an assembly line and as a bad batch he is one of the ones that gets tossed out for not being perfect. I know that this is just a word and that it is the word used to describe his difference but I still do NOT like it. He is not a defect nor does his defect define him. I wish there were a better way to describe this but there isn’t. I walked away from the doctor and sat down with my husband. I told him what the doctor said and he asked me why I was upset. I told him I don’t like our son’s face being referred to as a defect, isolated or not. To this day I still do not like it. I say that my son has been cleft affected because that is what happened. HE does not have a defect nor is he defective.
Many emotions are felt day in and day out at the NICU. It was hard to leave each night without our son and I would lie in bed at 2 a.m. and call the NICU to check on him. The nurses urged me to get some sleep because they were taking good care of him and reminded me that when we got to bring him home there would be no sleep or help so I should really be taking advantage of the fact that he was in such good hands. They were right. I was exhausted. We would try to sleep but it was hard without your baby right there with you. We were missing someone and his presence not being felt in our house was obvious. So as much as you try to sleep it’s going to be difficult. It just is.
Our days consisted of meeting with the OT (occupational therapist) daily to work on feeding him with a special bottle and building his oral muscles so that they could remove the feeding tube and we could get him home. He was pretty eager to leave as well because he was working hard at learning to eat from that special bottle. He would get pretty tuckered out because he was expending a lot of energy to do something that was not coming naturally to him as a result of the cleft palate, but we continued on. We also met pretty regularly with his team from St. John’s. Dr. Salomonson and Ann would come to visit and instruct us on the duoderm taping and placement of the nasal stents. They worked with us until we seemed somewhat comfortable. We would text photos and they would respond back with instructions on what to correct or do differently.
At about the 5th day the OT let us know that our baby was getting the hang of it and so were we. She was going to recommend that we start the discharging process and to get him scheduled for his circumcision. Geez, our first surgery and I was so not ready! It was quick and I’m told painless but who knows. We continued to work on feeding and our technique. We cut out templates of the duoderm tape and kept them in a Ziploc so that they were handy for us to put on and we wouldn’t be scrambling to cut one out and get one on if he was fussing. We did as many things as we could to make it easier on us when we finally would get to bring him home.
The 7th day rolled around and the OT and nurses came in to watch us feed him once again and to measure how many ounces he had been taking in. They informed us that they were confident the feeding tube could be removed and after that we would monitor him and his feeding for the remainder of the day. He would be weighed and his ounces consumed checked and if all went well we could take him home at the end of the shift. It was both exciting and frightening to hear that. I mean we definitely wanted to bring him home but here in the NICU he was hooked up to monitors checking his heart rate and breathing with nurses monitoring his every ounce intake and growth every hour. All of that would be gone once we got home and that scared us a little. So while our little one slept I rounded up a notepad from one of the nurses and began copying their chart so that I could continue to monitor his ounces at home and times he was feeding. I had the nurse go over again on what I needed to do with his post-op instructions for the circumcision and we practiced putting in the nasal stents with the nurse there.
Our time to go home finally arrived and the outfit I had been carrying around in our bag of tricks was going to get to be worn for his exit from the NICU! Our empty car seat that we had been hauling around was about to be used and the bassinet waiting next to our bed was going to get a little attention. We took pics of him unhooked from his monitors and with his nurses that had cared so gently for him and us while there. We got to bring our baby home and walk out of the hospital with full arms and hesitation. It was a good day though. The nurses told us to call them for any questions no matter what time and if there were any problems with feeding at home to bring him back to the NICU and they would help us. We had a lot of support and felt like we got this. Ha!
We got home and he looked as surprised as we did being in our home. Our home felt like a place we just had not seen in awhile, which it was but with him here it felt different. Our daughter would not be home until the following day so it was just us. The three of us. It was good. Our son did not see the bassinet initially as both of wanted to hold him all night and walk around with him. He was not attached to monitors with lead wires that extended only so far and we had this freedom and space to move around in that was foreign. The only person that slept at all was our little guy. We stared a lot at him and whispered love you’s and gave kisses.
All of us did it. We survived a week in the NICU! Learned how to feed our son and get on a schedule of pumping and changing diapers. Looking back we were parents of an infant and although there were more things to attend to than with a typical newborn we all adapted and just figured it out. We tentatively did the taping and nasal stents but we did it and without crying (us crying not baby). So survive we did. And you will, too.
GEN-01 This is a link that will take you to a booklet published by the Cleft Palate Foundation and is a great resource of information regarding genetic testing, causes and treatments of cleft lip and/or palate.
Like the many families of children with birth defects, the CDC wants to find out what causes them. Understanding the factors that can increase the chance of having a baby with a birth defect will help us learn more about the causes. CDC coordinates, funds, and collaborates on one of the largest studies in the United States―the National Birth Defects Prevention Study―to understand the causes of and risks for birth defects, including orofacial clefts.
The causes of orofacial clefts among most infants are unknown. Some children have a cleft lip or cleft palate because of changes in their genes. Cleft lip and cleft palate are thought to be caused by a combination of genes and other factors, such as things the mother comes in contact with in her environment, or what the mother eats or drinks, or certain medications she uses during pregnancy.
Recently, CDC reported on important findings from research studies about some factors that increase the chance of having a baby with an orofacial cleft:
Smoking – Women who smoke during pregnancy are more likely to have a baby with an orofacial cleft than women who do not smoke.
Diabetes – Women with diabetes diagnosed before pregnancy have an increased risk of having a child with a cleft lip with or without cleft palate, compared to women who did not have diabetes.
Use of certain medicines – Women who used certain medicines to treat epilepsy, such as Topiramate or Valproic acid, during the first trimester (the first 3 months) of pregnancy have an increased risk of having a baby with cleft lip with or without cleft palate, compared to women who did not take these medicines.
Family history – Parents with a family history of cleft lip or cleft palate face a higher risk of having a baby with a cleft.
Race – Cleft lip and palate are most common in American Indian and Asian children. Black children are least likely to have a cleft.
Sex – Males are twice as likely to have a cleft lip with or without cleft palate. Cleft palate without cleft lip is more common in females.
Being obese during pregnancy – There is some evidence that babies born to obese women may have increased risk of cleft lip and palate.
There is a lot of information on the internet. There are studies that have been done to list possible causes of a cleft lip and/or palate but it’s difficult to to pinpoint an exact cause. I, for one, racked my brain trying to figure out what I did wrong, what I could have done differently, read labels of vitamins, etc. and at the end of the day it doesn’t make a difference. It happened.
Instead of looking back and trying to get an exact reason as to why this happened was not going to do me or my baby any good. What I needed to do was look forward, have a plan, and put things in place to make things easier on us as a family dealing with this. If I can offer any advice to you it would be to not beat yourself up by playing the blame game. Yes, you are the one carrying this baby and everything you do has an effect. However, the facial cleft forms within the first trimester and most women do not even realize they are pregnant until about 6 weeks. There is no magic pill or formulation that you could have taken to prevent the cleft formation and you are not this bad person that did something to deserve this. As much information as there is, doctors are still not certain what it is exactly that causes cleft formation and are unable to offer information as to prevention.
Do not spend a great deal of your energy trying to pinpoint an exact cause. You should be taking care of you and this baby the best way that you can. Get rest, eat right, take your prenatal vitamin, make and keep all of your prenatal appointments and ultrasounds, and prepare for baby. Your baby feels everything that you feel. You do not want to feel despair, anger, or disappointment the duration of your pregnancy. Let those feelings be what you feel and then let it go. You are having a baby.A beautiful baby that is a light growing inside of you. Let that light shine and shine brightly. This baby is yours and needs you. You are truly already a parent and this baby is relying on you to do whatever you can to take care of him/her. So take care of you, too.