Testimonial of Carla Freitas Andrade, mother of Maria Julia Andrade, age 4, who was treated by Dr. Andrew Scott of the Pediatric Otolaryngology/ENT team at Tufts Children's Hospital.
"First of all I want to thank first Dr. Scott for all the help he gave us since the first contact we made via email in the beginning of 2014. We were on the other side of the Atlantic Ocean and knowing through him that there was a chance of improving Julia’s speech was for us a wonderful news. Today, one year has passed, and everybody says it was a total miracle what happened to our child. After visiting your country for the first time, and knowing that you helped us so much by changing Julia’s life, it is always a pleasure to say to everybody that United States of America will stay in our hearts for ever.
I write this to you and cry, because my family will be forever thankful to Dr. Scott, all his team, all the Direction of Tufts Children's Hospital for helping us achieve what we have today. Julia not only speaks better, it seems you gave her the potion of happiness. I thought in the past that she was happy, but now I know her life will be completely different. She is happier and more confident. Thank you so much for everything. This testimonial is to tell people how grateful we are to you all. I can only recommend Dr. Scott and Tufts Children's Hospital to anyone. Good Bless you and Good Bless America.
1. Can you give me a little background on Julia’s condition before she was treated by Dr. Scott? What were your concerns? What made you decide to seek treatment for her?
Carla: Julia was born with Soft Cleft Palate and was submitted to a surgery when she was 6 months in order to close the palate. Before the surgery she had problems when she was eating. When she was drinking milk, most of it came out through the nose. She couldn’t suck the bottle properly but after the surgery this was completely solved.
Back then, I thought that the problems had ended… But when she started to grow, I realized that her vocabulary was very limited. She was my third child, so I knew what was expected for baby first words. She was accompanied by local doctors and they always told me that children are not equal, that we should wait patiently for her natural evolution, but one day, when I looked at an evolutional table of words that the child was expected to say at her age, I realized we had a problem. I called a friend of mine that worked with disabled children in a local school and asked her to see Julia. We had a team of speech therapists analyzing her and it was only then that I was confronted with the reality of what Julia’s problem really was. The therapist was working since years with a boy age 7 with a similar problem and I had the opportunity to hear him talk. My friend wanted me to realize that he was a success case and luckily, as Julia was being diagnosed very early, she would talk like that.
I was shocked because I though the problem she had of Soft Cleft Palate was solved with the initial surgery, but unfortunately that didn’t happen, and we started months and months of speech therapy when she was about 2 years old.
She was going twice a week to therapy but I knew it was going to be difficult for people to understand what she was saying. We worked months and months on one single letter or sound and it was very hard for her to say it properly.
Back then although she was a happy child, she was very shy when she was with strangers. When she was asked in public to speak, she would answer, but as people had difficulty in understanding what she was saying, we had to “translate” was she was saying. We used to call it “Julish”, Julia’s language… She was a beautiful child, because as she had difficulty in speech, she developed other capacities, such as being able to show us her feelings through her eyes and smile. It is something that only families who live with special children can understand.
We loved her the way she was, but how would the world accept her? These were our major concerns when we decided to seek for help. I always thought that if the man can reach the moon, there must be a solution for Julia somewhere in the world.
2. What brought you to Boston? Was this your first time here? Why did you pick Tufts Children's Hospital?
Carla: When we realized that Julia would not improve as much as we wanted just with speech therapy, we decided to look on the internet for hospitals around the world who were doing improvement surgeries on children who were submitted already for the first time to Soft Cleft Plate problems. Most cases we found in the internet had had success in the United States, so as we have friends in Boston, we asked them for help in order to choose the best hospitals to send emails explaining what Julia’s problem was.
Initially we received several answers, and it was very difficult to choose a hospital. I was far away, with the life of my child in my hands. Don’t ask me why, but from the beginning Dr. Scott's emails seemed for me to be the most sincere of all of them. It brings tears to my eyes just to think on the hard difficulty I had to say yes to his email. Yes I will go alone with her, leave my other 2 children and husband behind, not knowing the country nor how the final result was going to be. The decision was one of the hardest in my life. But for Julia’s sake we decided to risk.
Dr. Scott contacted the direction of the Hospital and they managed to help us financially, so we didn’t have to pay for it totally. I imagine that if it wasn’t for that we couldn’t manage to go to the USA. The friends we had in Boston helped us with their hospitality, and opened their houses and hearts to me and Julia. It was a blessing to have them there. I am thankful to all of them that helped us throughout all this process.
3. Can you tell me about the area you live in in Portugal?
Carla: In Portugal we live in a small island called Madeira. It has 742,4km and about 250 thousand habitants. There is only one main hospital that is divided in two different buildings. We live majorly of tourism.
4. Tell me about your time at Tufts Children's Hospital. What was the team like? Is there anything that they did to help make you feel more at home? What impressed you about Tufts Children's and/or the Pedi ENT team?
Carla: The time I spent at Tufts Children's Hospital was much better than I expected. It is never easy to take a child to a surgery, even more when you are in a foreign country, not knowing how the system works inside a hospital. Well, what happened was that I had an amazing experience with a team very focused in keeping us well informed of what was going to happen before and after. There was no situation I remember that could have been better. For example, I was completely surprised and it was unexpected that all doctors and nurses involved in Julia’s surgery introduce their selves to me and talked a bit of how it was going to be. The nurses in all sectors were marvelous. Very caring with Julia and always guaranteeing that I was calm and emotionally well. It really impressed me that there was a good interaction between all of them and that the mail goal was to keep the patients and family informed and calm. That helped a lot in all this process. Something that also amazed me was the amount of technology you have at your disposal. I am talking about number of computers per sector; computer controlled process when administrating medicine to patient, and so on…
5. How is Julia doing now?
Carla: Julia now is doing very well. When she first arrived home from the United States, a lot of members from the family that knew Julia’s condition before, started to cry when they heard her speaking. A few weeks only had passed and the improvement was already visible. In the past she was having speech therapy twice a week for 1 hour and now she is doing only from 15 to 15 days. The therapist thinks she will be OK in the end of the year.
There are still difficulties to understand her speech, I can’t deny that, but now it is only a question re-learning to speak. Before surgery, she spoke more nasal and with difficulty because of her palate limitations. Now her palate looks normal, but we have to work hard with her everyday in order to force her to speak correctly. In the past she couldn’t do it. Now she can, but she is still trying to speak as in the past. When we show her pictures of objects and she has to say the name one by one, the words come out correctly, but the problem is in the fluent conversation, when she finds easier to talk using sounds from the past because it is quicker. It will be a long journey but I believe we can do it!
6. Is there anything in particular that stood out to you during this experience that we did well? How would you describe your experience to a friend?
Carla: There were several episodes that really stood out to me during this experience.
The first and more important was getting to know the person that changed Julia’s life, that is Dr. Scott. He will be remembered forever in our family. I have already said this to him and will repeat again, that his work of changing children’s condition of life must be very rewarding. And you in Tufts Children's Hospital should be very proud of such an excellent doctor developing his work and a great person as a human being. We are very thankful to him, his team and to the hospital’s direction for helping us.
Another episode was the preparation for the surgery and the post surgery. I will always remember how caring all the team was with us. The nurse that stood with Julia showing her all the things she was going to be using in the surgery and helping her to decorate the oxygen mask was just spectacular. I must also talk about the nurse that accompanied us in the post recovery, and assisted me while she was still recovering from the anesthesia. That woman was very important to me. It was as if my mother was there with me, caring me and guaranteeing that I was eating something and drinking a coffee while Julia was still sleeping. She was great.
I have also to remember that area that pediatrics has for children to play, is just great for their emotional improvement. Just by knowing she was going there, was already an improvement in her health condition. It was a great place with nice people and good activities for them to be distracted.
Last, but not least, there was an episode that really transformed positively Julia, like a miracle happened inside that room, that is receiving the visit of the Red Nosed Clown. They came by surprise and played with her for a while. That was completely miraculous to her. Helped heal and forget of all the pain she was feeling in that moment. I found their job just amazing.
All these episodes I tell are just some of the excellent experiences we had there.
7. What advice would you give to other families in a similar situation to you?
Carla: I would advice other families in this situation to believe that they are in good hands in Tufts Children's Hospital. We as parents have to believe that there must be a solution for our children. I always said that if the man can reach the moon, there must be somewhere out there a way to give better condition of life to my child. You have to believe and go for it. And if by any chance things didn’t go the way we thought it would be, at least we can look in our children eyes and say that we tried. The worst thing there can be is not trying and feeling guilty for that.
I would go through the same process again and advice any family to do so. Children that have speech limitation are very shy and sad. They can’t be understood by others and that takes out the happiness of them. We as parents want our child to be happy, so everybody should search for any solution that could help our children’s condition. That is my point of view.
8. Is there anything else that you’d like to add that I haven’t asked about?
Carla: I wanted to thank the family that welcomed us during this process in Boston. Without them, things would have been very hard to pass. Thank you so much to Mariasinha, João, Tina, Hernani and all their family for the help and the love they shared with us. You were just amazing. I would also like to thank Julia's speech therapist, Andreia Sousa and to Centro Terapeutico do Garajau e de Machico in Madeira Island for all the help they gave to our family. Andreia's work with children is just amazing. I could only recommend her and the center where she work to any family facing the same problems. She was not only our speech therapist, but also a good friend that will be remembered for our life. "
Carla and Julia Andrade