I thought this story would be important to tell considering what parents can go through when their child is born with a cleft lip and palate. Here is an informative link about Cleft Lip and Palate http://en.wikipedia.org/wiki/Cleft_lip_and_palate . When I was about 5 months pregnant with her the doctor gave me an ultrasound. We didn't have to wait long for the results to come back as to whether my baby was healthy or not. It turned out that she had barley a nose and no upper lip. The doctor explained that it was called a cleft lip because at the time they didn't realize that she had no palate either. My husband and I sat and listened patiently as the condition was explained to us. Soon after that my appointments where transferred to another hospital that was better suited to handle my case.
Then came the day she was born. Her birth was not complicated and it didn't take too long for her to come into this world. The second she was out of my body they took her and put her in this little cradle set up with machines and began to look her over. That is when they realized she was also missing her palate and had really unformed nostrils and where her top lip should have been was just to little balls of flesh. They diagnosed her as having a Bilateral Cleft Lip and Palate. They told my husband and I that her case was severe. She stayed in the hospital NICU for about 2 weeks and we had to learn to feed her with a Haberman Feeder, here is a link explaining what a Haberman Feeder is http://en.wikipedia.org/wiki/Haberman_Feeder . It took us time to learn to feed her with the Haberman Feeder. But eventually we managed to get the hang of it and we where able to take her home.
The first week we had our daughter home we where so excited. Our family visited and saw her and everyone adored her. Her older brother our son was very happy to see his new baby sister. By the end of the first week that she was home she developed a little cough. I brought her to the doctors the next day and they told me she had a cold. So I brought her home and that night her cough worsened and again I brought her to the doctors and they told me that there was nothing to worry about and that she had a cold. Now it is the third day and her cough is getting worse I call my husband up at work and tell him that her cough just wont stop and now when she coughs it was almost like she couldn't take any air in and her lips where blue. When he heard what I had to say he hung up the phone and left his job. We rushed our daughter to the hospital and they took a Q-Tip and swabbed her nose. The doctor came out to the waiting room and told us that it is probably The Croup and to keep our eye on her and sit with her in the bathroom and to run hot water for steam to help with her cough. Here is a informative link on The Croup http://en.wikipedia.org/wiki/Croup.
We took our daughter home and immediately started the shower and we sat with her most of the night in the steam. The next morning I told my husband that he should go to work because we are living paycheck to paycheck and he said ok. I was confident that I was going to get a call from the Hospital that we took our daughter to the night before to tell us that the results are back and it is the Croup. That way they could give us some instructions and a followup appointment. But the call never came and by mid morning my daughters cough was still getting worse. It was almost like she was having trouble taking in air before she coughed and the cough was just horrible. At that moment my husband came home and said he did not trust what the doctor had said and something else is going on here. When we looked at her she was turning blue and he said that's it we are going to another hospital. We rushed her to another hospital that was about a one hours drive from where we lived. When we arrived in the emergency the woman behind the reception desk asked if she could help us. We showed her our daughter and began to explain her situation. She took one look at our daughter and didn't let us finish explaining but instead ran from out from behind the desk through two swinging doors. Soon after that two ER Doctors came out and a nurse reached her arms out and asked for my baby. In a reluctant manor I handed my daughter over to her and she place her on a child sized wheeled bed and wheeled her away between the two doors. One Doctor followed the nurse with my daughter and the other stayed behind and asked us some questions. After answering all of his questions and watching him write down all of our answers he asked us to sit in the waiting room and some one will be with us soon. A half our went by and my daughter was crying and we could here her all the way in the waiting room. My husband said enough is enough and barged in through the swinging doors. Then the crying stopped but I could here him yelling. I pushed open one of the doors to see my husband holding our daughter and telling them to find some one that knows what they are doing. That is when one of the Doctors spoke up and said that it was ok he will finish the IV. I saw that my husband was handling the situation so I went and sat back down in the waiting room. He came out of the doors and told me that they where having trouble putting an IV in her. We where in the waiting room for what I can remember about an hour when a nurse came out and asked us to follow her. She led us up to the 4th floor in the elevator. When the doors opened she led us down the hall to a room and there was my daughter surrounded by Doctors and Nurses. I have never understood this, but as we entered the room the Doctor looked at us and said someone will be with you shortly and just like that they all left the room. My husband and I should have question that moment but at that time we where to focused on seeing our daughter lying on that bed in an oxygen tent with monitors and tubes hooked up to her. After sitting there for what seemed like an hour another Doctor came in and began to explain what my daughter has been diagnosed with "she has RSV" she told us. Here is an informative link http://en.wikipedia.org/wiki/Human_respiratory_syncytial_virus. She also explained that she was from our daughters pediatricians office and that she was very sorry about the mix up with my daughters original diagnosis. Now it is important to keep in mind that this is back in 1997 when there wasn't a lot of information put out there about RSV. I am also happy to report that my daughter made it through that awful virus successfully.
Her first surgery to correct her Bilateral Cleft Lip and Palate was when she was 3 months old. Through the years she has had several surgeries to correct. All her procedures where done at the same hospital that she was in for RSV up until she was 10 years of age. That is when we ran into the first snag in her corrective surgery. Our daughter needed a Orthognathic procedure. Here is an informative link http://en.wikipedia.org/wiki/Orthognathic_surgery. This procedure would also include a Bone Grapht. Here is an informative link http://www.cleftline.org/what-we-do/publications/bonegrafting-the-cleft-maxilla/. Now if you clicked on the link read what needs to happen you would see that this Bone Grapht needed to take place before my daughters permanent teeth came in. At this time we had the same Health Insurance and she has had the same Doctors in the same hospital since she was 3 weeks of age. Before this procedure they have to prepare the mouth with Orthodontic work that also includes an Expander. Our Health Insurance was denying our daughter the entire process. They said that it was cosmetic and not necessary. When I would try to appeal they would state that there was no denial for the procedure so therefore we could not appeal. I did explain that they did deny the procedure and I even have the denial letter. I wrote letters to Senators, Congressman, even our States Governor. They on behalf of our daughter wrote letters to our Insurance Company explaining how awful it was that they wouldn't pay. Now this battle went on for about 4 years. During these 4 years our income was about $36000.00 a year. And keep in mind we have a mortgage, medical costs, house bills such as, lights, food, oil and electric. We called around to other Health Insurance Companies and even they said they would not cover it. They also claimed it was cosmetic. Also during this time other moms like myself where trying to get the Reconstructive Surgery Act pushed through our State. So that parents would never have to go through this again. We where running out of time and our daughters Doctors told us that basically the fight was over for them and it would be better if we switched our daughters case to a different hospital. And that is exactly what we did. We also switched our Health Insurance as soon as one told me that they would cover the procedure. But even with the verbal yes over the telephone I still didn't trust that they would cover the procedure. So I did more digging before we signed on with them. And on there own website under there covered benefits page I found a document that stated the all procedures that include Cleft Lip and Palate Repair are a covered Benefit including Orthodontic, Orthognathic, The Expander, everything our daughter needed to happen. Now I was so not trusting with everything we had been through so I printed the document out and put it with my daughters file. Then as I was looking up more on Cleft Lip and Palate I came a across a website about Cleft Lip and Palate and about this Congenital Defect. I had never heard a Cleft Lip and Palate referred to as Congenital before. It was also referred to me by Doctors and Informative Booklets, Websites, Insurance Company, as a Birth Defect. Here is a link http://en.wikipedia.org/wiki/Congenital_disorder . On the Health Insurance website they also explained under there covered benefits that all Congenital Defects are fully covered and I printed that out to. So we sign on with them and we are at the new Hospital with our daughters new Team and the first thing they wanna do is prepare her for the Bone Grapht and the first thing the Health Insurance company does is deny the cover. I asked our daughters Hospital Case Worker to look it up on their website that they do cover it. She did and said that she could not find such a document. Thankfully I sent her a copy of what I had printed out and poof! The coverage magically appeared!
Our daughter is now 16. She has had her Bone Graph and has about 3 or 4 more surgeries to go before she is finished. It has been a long battle that has brought us to the breaking point so many times but thankfully we are finally arriving to the end of her Constructive Journey. And did I forget to mention that she has been such a trooper through all of this. My heart sinks every time I see her wheeled away for another surgery but she just waves with a smile and says "Be right back mom".
