Dear Pam, Daniel and Sarah,
I miss seeing your precious smile and receiving your special hugs everyday when you arrive each morning. I am wishing a fast and safe recovery. Pam and Daniel you have a very special girl. I am sending my love and prayers to you and your whole family.
We all miss Sarah in Room 9 and can't wait to see her back in New York.
My thoughts and prayers are with you and Sarah. I am so impressed with how strong and vigilant you have been throughout this process. The sun will shine again, and you both should be very proud how you've risen to the occasion and managed this challenging situation with care and attention. Sarah is fortunate to have such amazing parents!
As a former resident of the Boston area, consider that Sarah might be having a nasal reaction to the different pollens and air in Boston and that the hotel room might be a bit dry. I know she's a bit small, but have you tried playing a game in the bathroom under the shower? Not only does it wash off the pollens but lubricates the sinuses. I pray she's not coming down with something, but if you spend some time with her in the steamy room, she might feel better.
Pam -- You and Sarah and your whole family are in my thoughts. I hope everything goes as well as can possibly be over the next few days and I will be looking forward to seeing Sarah again at school & at the playground in the not-too-distant future. Please let her know we are sending her our wishes for a Happy Birthday and a speedy recovery! With love from Anna (Marley's and Maya's mom)
Pam -- Please know that I am thinking of you, Sarah, and your entire family. I know that words are weak at this time, so I will leave it at stay strong, give each other big hugs and kisses, and know that Sarah is in good hands and she will be better than perfect very soon. Much love, Debbie Hodys
Good Luck to Sarah and her lovely family. I found your story as I was ordering Dr. Adam's book on Heart Valve Surgery. I will be meeting with my surgeon here at Stanford in the next week to determine when I will have my surgery. I too have a congenital malformed mitral valve that must be fixed soon. Although I am older (39), I know how frightened you all are. My families (I have 3 young boys) thoughts and prayers are with you all. Also, Happy Birthday Sarah
Hi Sarah.You will do fine with the surgery.I had my aortic valve replaced Dec.2009.They will take good care of you.Take your favorite doll to hold at the hospital.I had a red heart shaped pillow given to me to hold.I also had my St.Jude medal with me.God bless you.
I had my surgery to cure my mitral valve regurgitation about a year ago. It was kind of scary but everyone was very nice. I am happy to say that I am back to swimming and riding my bicycle as good as new. Just be good and listen to what the doctors and nurses ask you to do. Lots of fun to look forward to after getting all better even when you are 62 years old.
Dear Pam, Daniel, Rachel, & Sarah,
There is not a day that goes by that I don't think of you and your family and what you are going through. I have started a chain of prayers for Sarah that starts in Florida and ends in Shamokin, Pa. I believe in the power of prayers and I know Sarah will be OK.
Love, Frankie & Bob
Hello from Spain
We know several children had no solution in other countries and Dr. del Nido has operated them successfully.
Many children from other countries travel to Boston because is the best hospital in the world.
We have consulted with different surgeons in Europe and considered to Dr. del Nido is the best surgeon in the world.
You will be very worried, but Sarah will recover very quickly. Young children are recovered in a few days. Our son was operated on Monday and on Friday was in the hotel.
Parents who live these operations we know what we are suffering and we understand.
Writing these words also we were excited,
I wish from Spain that everything goes well, we will consult the blog
Many kisses from Spain
Every day I think about you and Sarah and about all you are going through. Your mother continuously fills me in on all details and new events. however, I also want you to hear from me. I want to tell you I admire your courage, your strength and most of all the wisdom and good judgement you have shown in handling this crisis. Though many uphill battles and difficulties still lie ahead of you and Sarah, in my heart I know you are both strong and smart and will come out ok.
Your mother and I are here for you at any and all times.
Hello from Spain!
Sorry for the translation, that do not know the English language.
I would like to send them a message of hope from Spain because Dr. Del Nido is the best specialist in the world to repair mitral children valves because that is the most experienced surgeon.
Our four-year-old son was operated by Dr. Del Nido in June 2010, in Boston, and he managed to repair the mitral valve.
They are very difficult times, but it is fortunate that Sarah is in the hands of Dr. Del Nido
Many kisses from Spain,
I have just read your story and while wishing you had other viable choices and would take all the pain upon yourself if you could, try and focus on being thankful your child has been diagnosed and will soon be given a new chance at life.
I had my mitral valve repaired 18 months ago and it is not a secret that pain is involved. So too is hope for a healthy future.
A perfect world would be no sickness or pain, especially for beautiful young children, but instead in this day and age we are thankfully given great doctors with the knowledge and skill to perform miracles.
These next weeks will try every bit of your resolve. Believe in your faith. Believe better days are ahead. Believe in the doctors. Believe in each other. Very soon this will all be in the past.
I will send my healing energy to Sarah on March 16. I will envision purple and white light surrounding her and all of the hospital staff that that will be in contact with Sarah.
I know that Sarah will be great!
I am also a mother a young man who was 35, when he had his heart valve surgery. Our whole family bonded together and sent Adam Pick, the originator of this web site, purple and white light. Adam was great............and Sarah will be great!
Keep the purple and white light swirling around. Sarah will be great!
My name is Mandy and I am 37 years. On August 8, 1980 I had open heart surgery for pulmonary stenosis. I did just fine, better than anyone hoped. I have a large scare down my chest that my family referred to as my "Zipper". I have always felt it made me very special...a miracle.. I am married and have two beautiful daughters. On September 16, 2008 I had my second open heart surgery to replace my mitral valve and repair two other valves. I am doing really good today. So tell your mom and dad that your going to do just great. Us, heart kids are stronger than most, we grown up to be determined and driven with extra Kind and Strong hearts...
I know you are feeling the outpouring of love from this site. My valve surgery was almost a year ago and I am doing well. I was told I had a murmur when I was a teenager (apparently had rheumatic fever). I was almost 72 when I did have my surgery. I have been prayed for and I have prayed for others on this HVJ site. Sarah will be in my prayers for a successful surgery next week. God is good.
I follow Adam’s Heart-Valve-Journals because I am a double heart valve patient and find the site incredibly helpful in learning more about my condition and preparing for my eventual surgery. When I read Sarah’s story I thought my daughters experience might be helpful to you.
My daughter Olivia was 8 years old in Oct., 2003, when she had heart valve surgery for severe mitral regurgitation at the Cleveland Clinic Children’s Hospital. The surgeon was Dr. Roger Mee who has since retired. We were referred to Dr. Mee by our local pediatric cardiologist who had been tracking Olivia's MVP and was concerned by an enlargement of her left ventricle. We met with the surgeon who carefully explained our daughter's condition and advised why he was recommending surgery. My wife and I were initially shocked by the news and we thought okay, when... maybe in a few years or sooner? In a whirlwind, we returned to Cleveland within two weeks for the procedure. Dr. Mee was considered one of the top pediatric heart surgeons in the world and renowned for taking on the most complex cases.
The plan was to repair the valve. Without getting into the technical issues of Olivia’s condition, the percentages for a successful repair were given in the 70-80% range and frankly, we didn't spend to much time thinking about the alternatives. We felt we had the best surgeon and we were at the best hospital to fix Olivia's heart. On the morning of surgery, we awoke at 5:00a to prepare for the short trip to the hospital. As my wife and I were getting ready, Olivia was sitting quietly looking out the window lost in thought. After several moments, she turned back to us and asked, "Mommy, will I still be smart after the operation". We assured her she would be as smart as ever and would be able to go back to school as soon as she felt good enough to return. Upon arrival to the hospital we went to the pre-surgery waiting area for final check-in and prep. Olivia was very calm and curious about what was developing. She was given a gown and prepped for surgery and then a mild sedative which really relaxed her and made her drowsy and chatty. We waited for approx. one hour before some nurses approached with a gurney to take her into the operating room. My wife was allowed to go with Olivia into the operating room and comfort her until she comfortably drifted off from the anesthesia. We then went to the waiting room with family and friends where we were updated periodically on progress by a team member. We were cautiously optimistic but felt very positive throughout the morning.
Following the repair, we were advised that Olivia was removed from bypass and given an echo to test the fix. If the repair was “good” with mild to no leakage, then the procedure would be considered a success and they would begin to close. Unfortunately, the leak remained mild-moderate and because of the doctors extensive experience he knew that the odds were significant that Olivia could return in a year or two for valve replacement. Olivia was then put back on bypass and the surgeon installed a St. Jude mechanical mitral valve. Initially, we were very upset by this news especially because of the need to take Coumadin to prevent blood clots from forming on the valve. It has been almost 8 years since the surgery and she has thrived. Olivia has had no complications from the Coumadin. It took a few months to dial in the medication and we now take her to our local doctor once a month to check her levels and to infrequently adjust her meds. The process has not turned out to be the daunting path that we thought could result by being on blood thinners. I am sharing this information with you because it is important for you to be prepared for the unlikely news that they will not be able to repair Sarah’s valve. More importantly, I want you to know that if she does receive a mechanical valve it will not be a devastating failure! Children are amazingly resilient following these procedures and you will be stunned at how quickly she bounces back.
In your search for a surgeon, you must ask the doctor what he/she will do if the repair is not 100% and what their experiences and results are with installing a mechanical valve, if required, following an attempted repair. You want a doctor who is experienced not only in repair but also a surgeon who can-make-the-decision, in the moment, to replace the valve if necessary.
I have saved our daily e-mail updates (including a few pictures) that we sent to family and friends while in hospital. It’s real and briefly details our daily experiences from start to finish. I would be happy to send you this string of messages if you reply to my e-mail address: email@example.com
We will continue to follow Sarah’s blog and pray for a great outcome!
Pam - Thank you for sharing Sarah's story. My thoughts are with you both. I am having my aortic valve replaced on April 7th in Boston at Brigham and Women's. As scared as I am for myself, I cannot imagine what this would be like for one of my two boys. Sarah sounds like she is quite a fighter and she will do wonderful. They have come so far with these surgeries - be strong and have faith. All the best. Randa Gaalswijk
Dear Sarah, I am an old (68) man from Africa. I received a new heart valve last year which changed my life! I can breathe and walk and play again, yes old men also play!
I have already gathered a whole bunch of good and healing spirits and at least 10 guardian angels together and I am sending them as a team to look after you during your surgery.
It is the same team of good spirits and angels who looked after me, so I know that they are very good at guarding over patients and guiding the wonderful surgical teams who do these magical operations.
After the operation you will have all the enrgy in the world and be able play again without your heart beating so fast... Ask me I know, I can also now play without getting out of breath.
To your Mum, Pam please also draw on these spirits from Africa. Put your hands up, close your eyes and tap into the universe for strength, solace and peace. It is yours, just ask. Soon Sarah will be a healthy, happy child.
I had the same thing as Sarah - the chords on one leaflet were not attached and a ring was put around the annulus. At the same time as the mitral repair, an atrial/septal aneurysm was also repaired and I am 52 years old. As parents, you probably wish it was you that had to go through this and not your little girl but she will be fine - my thoughts and prayers are with you all.
I had my mitral valve repaired about 18 months ago so I kind have an idea of what you are going through. Just know that all my thoughts and prayers are with you. I am sure that all of us on this journal feel the same way. My sons were 8 & 3 at the time and it is what kept me going.
Hi Sarah & Family, It will be 4 years this month that I had my mitral valve repaired. I was in denial and I was really scared. But I kept thinking of my daughter and how I wanted to see her graduate. I went through with the surgery and everything turned out fine. It will for Sarah too. She has a lot of prayers coming her way! Think positive and think happy thoughts! My prayers are with you all!!
Sarah, I am 56 years old and had open heart surgery when I was only 2 years old-back then I was an experiment as they were only starting this kind of surgery. A year and a half ago I had an aortic valve replacement(bovine) and came through the surgery great. They do such awesome things now. I will include you and your family in my prayer group. Thinking of you all, Candy C.
In reading your story my heart was touched. I too was a petite blond little one who's parents faced cardiac surgery for their little angel. Just days before my 5th birthday I had surgery for a congenital heart defect (LAC). My problem was not detected until I was 4 years old. I have had a murmur and moderate mitral regurgitation all my life. At the age of 13, I recall being told that I would need a valve by age 20. I exceeded that prediction. A year ago at age 51, my mitral valve was replaced at Cleveland Clinic Dr. Petterson. I was hoping for a repair but ended up with a porcine valve replacement. Perhaps my outcome would have been different if the issue would have been addressed when I was younger.
Despite my heart issues, I have led a very full life, both personally and professionally. My heart issues have not held me back- I have truly been blessed.
It is amazing how far technology has progressed in the past 47 years. I encourage you to focus on the positive- the gifted surgeons, cardiologists, and pediatric facility. Sounds like Sarah is a blessing to those she meets. I am doing well since my surgery and the recovery progressed quickly even at my middle-age.
Prayers are coming your way for peace and calmness and a successful surgical outcome for Sarah.
i just read Adam' Pick's blog which brought me to baby Gabe's story. After hearing his story, watching the videos and learning more about Doctor Pedro Del Nido i feel confident that sarah is going to be OK! Dr Pedro Del Nido is a blessing from god and he will make her healthy. We are so lucky to have him as Sarah's doctor and I cant wait to meet him, hug him and thank him. xoxo
Hi Miss Sarah!
My name is Shari. I live in Ohio and I have a daughter named Sammi who is almost 13. She has pretty blond hair just like you. When I was born (a long time ago-I am 44 years old) I was born with the same kind of problem as you. My heart didn't beat "thump-thump-thump". Mine went "gush-gush-gush". Back then, the doctors could not fix my heart like they can do now. I had to wait until I was a grown up to get it fixed. I did, just last month. I had my heart surgery on February 8th. I was worried and scared, too, but guess what? It wasn't bad at all. My doctors and nurses took really good care of me and when they gave me the medicine I fell right to sleep. The next thing I knew it was all done and my husband and my best friend were standing there smiling at me. They could not fix my heart valve all the way, so they put in one that used to belong to a cow! Can you believe that?? It's funny to know that, but I don't care. I am just really happy that it is all done and that my heart now goes "thump-thump-thump" I am going to exercise class and went to my daughter's first dance competition and on Monday I even get to go back to work. Ok, I am not real excited about that. It's been kinda fun to hang out at home and watch tv and have lots of people send me cards and flowers and food! Please tell your Mom and Dad not to worry too much. You will do great and by the time the summer comes you will be running and playing and you will have a healthy heart. You are soooo lucky that doctors can now fix our kind of problem when you are little and you can just get it over with. Good luck and here's a big hug from me! Happy Birthday and I know you will have many, many more!!!
Pam and Sarah:
I was overwhelmed today when I read your entire story and journal. So much packed into such a short time. My heart and hopes go out to you. Boston Children's is a wonderful hospital that does miraculous things.
Pam, your story of your father -- oh my god, what can I say for the pain you are in. We are all praying for Sarah.
Pam and family,
We send our love and good wishes to all of you. I have been thinking about Sarah since your mom told me. She is going to to have the best care and will do very well. I feel this very strongly. This whole ordeal will be a memory soon and you can smile and go on to enjoy your darling children Rachel and Sarah. Love to all, Marion and Bob
DEAR PAM, DANIEL, SARAH AND RACHEL,OUR THOUGHT AND PRAYERS ARE WITH YOU EVERY MINUTE OF EVERY DAY.YOUR JOURNAL AND YOUR JOURNEY ARE VERY TOUCHING. ALL OUR LOVE, BOB AND RHO WISHING A VERY SUCCESSFUL SURGERY AND RECOVERY. STAY STRONG AND YOU ALL WILL GET THROUGH THIS DIFFICULT TIME.
Hi Sarah-We are friends of Mommy's from a long time ago!! You and your sister actually slept in our daughters crib when they were finished using it:))) You have the best Mommy and Daddy and sister in the world and know that you are going to be very brave when you have your surgery!! Can't wait until you are back home in NYC so we can get together-oh we live in Florida right by Aunt Stacie!! Love Kathy,David, Ally& Steph Levine xoxo
Sarah is a shining star and a precious angel. Her smile brights up a room and her eyes sparkle....just like her mom. I have no doubt that she will get through this surgery as she is a fighter. I love you and your girls so much and thank you for sharing this journal.