Jon’s Story

IMG_0326Written by Jon’s mom, Courtney B.

My son Jon was experiencing frequent ear infections and wasn’t hearing very well, which greatly affected his overall quality of life. Through my research on ear infections I found that having so many within months of each other may require ear tubes. I immediately decided to call Connecticut Children’s Medical Center and scheduled an appointment with Dr.Tulio Valdez.

Meeting Dr. Valdez was great. He is so good with kids and my son was very comfortable with him. After the visit my son wanted to go back! And he still does. Dr. Valdez looked in his ears and suggested we try a nose spray first to see if it would clear things up… but it didn’t. So, at the next checkup he had Jon take an ear test. The ear test showed that Jon had fluid in his ears, deteriorating his hearing. So Dr. Valdez approved him for surgery to have ear tubes inserted and adenoids removed.

Let me just say, I was so scared and nervous, but all the nurses and Dr. Valdez assured me everything was going to be OK. The day of the surgery I was a mess, but Dr. Valdez and the nurses spoke with us and tried to keep Jon from being scared. He was able to play video games and they explained and showed him everything that was going to happen. On the way into the surgery room Jon was scared and crying… and so was I. It took a few minutes to get Johnny to put his mask on and fall asleep, but everyone was there to help.

I’ll never forget, I was crying so bad when I saw my son under anesthesia. The nurses walked me out of the room and hugged me, telling me everything was going to be OK and to trust them. After that, I knew everything was in fact going to be OK. After the surgery, which only took maybe 40 minutes, Dr. Valdez came to tell us everything went well and that he would be back to talk. When he returned he brought us into a room and explained how the surgery went, what he did and how it is going to help Jon.

Dr. Valdez did an amazing job. My son has not had one ear infection! It has been one year since his surgery and the tubes are still in. My son’s hearing is much better and back to normal. I couldn’t thank Dr. Valdez enough for what he has done for my son. If your child has any issues I would definitely recommend Connecticut Children’s Medical Center, and Dr. Valdez.

Gabriella’s Story

by Adria Giordano, Gabriella’s Mom and Associate Vice President of Development, Connecticut Children’s

GG January 2008.JPGGabriella was born on August 28, 2003. A beautiful baby, Gabriella was born with two medical conditions, congenital cataracts and a heart defect, Atrial Septal Defect (ASD). Surgery on her eyes was done in infancy to allow her to see, but her heart defect was not detected until the summer of 2006, when she was just about to turn three years old.

She had no symptoms and we were shocked when during a routine medical checkup for a cough, a heart murmur was detected. After a visit to Connecticut Children’s Medical Center for an EKG and ultrasound, our worst fears were confirmed. Gabriella indeed had a Congenital Heart Defect, an ASD, which would require open heart surgery to repair and close.

We were in complete shock and saddened to hear our little girl, who had already undergone four eye surgeries, had to undergo yet another operation, this time on her heart. At the time of her diagnosis there was a procedure done in the heart catheterization lab which would avoid the need for open heart surgery where a patch is inserted through a catheter and placed on the hole. Our hopes were that his procedure could be done on Gabriella. However, this was not to be the case.

It was determined that the hole in her heart was too large to undergo this procedure and she would need to have open heart surgery. After the initial shock wore off, we had a very detailed consult with the cardiac surgeon; Dr. Dennis Mello, who explained every single thing to us, and never rushed us as we asked endless questions. Gabriella’s cardiologist, Dr. Felice Heller, was truly amazing, and took the time to show Gabriella and her little sister, Francesca, how the heart works, and had an amazing way of calming her fears, when she became anxious. She helped us explain to our little girl, how very special her heart was, and after the surgery it would be fixed. At three and a half years old, she put on her brave face and said without a tear, said “Okay mommy, let’s fix it.”

Better CT July 28 2014

It was definitely the hardest thing we have ever faced as parents. We soon met Paula Abrahamson, at Child Life Specialist at Connecticut Children’s, who soon became our friend. She stood by us every step of the way, and as we placed our child’s life into the hands of her surgeon, she hugged me and walked with me into the waiting room. In January of 2007 our little girl had an angel by her side during her surgery and recovery. Her surgery was a success and we are still amazed by how quickly she recovered. Five days later and she was running down the halls of the hospital and playing with her little sister! We are forever indebted to Dr. Mello, Dr. Heller, and of course Paula, “our” very special new friend, who was there for all of us.  In fact, it was truly the entire team at Connecticut Children’s who took care of Gabriella, from the doctors and nurses, to the technicians and anesthesiologists; everyone was amazing and helped to make her stay and recovery so comfortable.

We are thrilled to say Gabriella, or “GG” as she is sometimes called, is now 12 years old and has a very healthy and compassionate heart. She is in the 7th grade and loves to hang out with her friends, swim, and Irish Step Dance. She is a wonderful big sister and the oldest cousin of six. She loves children and has decided she wants to be a teacher when she is older. If asked about her chest scar, she will tell you her “heart story”, and how it has become her bravery scar. A few years ago, she decided she wanted to do something special for children, like her, who may need heart surgery, and thus founded “GG’s Hearts”, a nonprofit which donates special teddy bears to post-cardiac patients. Her bears have been given to children at Connecticut Children’s, Yale-New Haven Children’s, Boston Children’s, Maine Medical and even Ghana! They have also been donated to Little Hearts, a nonprofit support group for families of children who have a heart issue.

Recently, Gabriella has developed secondary glaucoma, an eye disease which results in elevated pressure in the eyes that can sometimes happen after cataract surgery, which she had in infancy. It can lead to vision loss and blindness, however with early detection and treatment, it can absolutely be managed. For the last year and a half, she has been on a number of eye drops to manage this increased pressure, but unfortunately, the pressure is now too high, and she will undergo her fifth eye surgery in a week. We hope and pray this will work, and although sad to have her undergo yet another surgery, we are very optimistic at a successful outcome. At 12, my daughter is full of questions, and has asked her surgeon what most kids her age might ask: will it hurt and will this fix my eyes. She is also anxious, of course, but I think it’s because of her medical history, and especially her heart surgery, that has given her an extra layer of toughness.  She has faced more than most kids her age have, but she is truly my brave girl. I try not to let her see me cry, but she sometimes does, and she comforts me. She truly is amazing, and I know will be a wonderful teacher one day. She is full of compassion, and I know touches many hearts. I also know she will get through this and will be even stronger than before.

April 2014 delivery

Our family is eternally grateful to team at Connecticut Children’s for all they have done for our daughter, as well as our family. We could not say thank you enough, and will continue to do all we can to give back to such a beautiful and special place, which provides amazing care to so many children, and saves many hearts!

For the last seven years, the Giordano family has hosted “Gabriella’s Scoop Night”, a town-wide ice cream social with Ben & Jerry’s West Hartford to benefit the Division of Cardiology. To date Scoop Night has raised $30,000 for the Division.

Pacemaker Helps Teen Overcome Challenges of the Heart

In honor of Heart Health Month, today we share Noelle’s story and how a visit to Connecticut Children’s Division of Cardiology helped save her life.

noelle_leopold_blog photoIn 2011, Noelle King was like any other middle school student – active and energetic. But by the end of seventh grade, the 12 year old became easily fatigued and dizzy.

“In gym class, I couldn’t run as much,” said Noelle, the daughter of Erica and Anthony Nipper of Amston. “In school, we would have to run two laps, and I couldn’t even do one. I would get so winded, and sometimes it felt like my heart was beating out of my chest.”
And then there was the time she blacked out and fell down the stairs with a laundry basket. “Just getting up from the couch, I would feel dizzy,” she said.

Noelle’s mother promptly took her daughter to the pediatrician, who heard a heart murmur and referred her to Connecticut Children’s Medical Center for further evaluation.

At Connecticut Children’s, Noelle met with Harris Leopold, MD, Director of Cardiology, and learned that she had an atrial septal defect (ASD), a hole in the wall between the two upper chambers of the heart that often closes on its own during infancy or early childhood.

“Noelle also had a complete heart block, where the top chambers (atria) and the bottom chambers (ventricles) do not communicate at all,” Dr. Leopold said. “So, her heart rate was reasonably slow and did not increase appropriately with exercise. Many children with heart block will eventually need a pacemaker,” he explained.

“Dr. Leopold told us that Noelle would need a pacemaker at some point in her life – maybe at 19 or even 45,” Erica said. But that time came sooner rather than later. By age 14, Noelle’s average resting heart rate dipped below 50 beats per minute. By comparison, a normal resting heart rate for children ages 11-17 ranges from 60-100 beats per minute.

In August 2013, Noelle underwent a same-day procedure to close her atrial septal defect and to insert a pacemaker – a small device placed in the chest to help control abnormal heart rhythms. It will help ensure that Noelle’s heart is beating at the proper rate during rest and activity and will send a signal if anything is amiss. Regular monitoring and follow-up visits will ensure that the pacemaker keeps Noelle’s heartbeat on track for the rest of her life.

“All of the staff treated us with such kindness,” Erica said. “We knew she was in great hands and we are enormously grateful for the heartfelt care Noelle and our family received and continue to receive at Connecticut Children’s.” For more information about Cardiology services at Connecticut Children’s, visit http://www.connecticutchildrens.org.