Sat 6 Jun 2009
Calling All Heart Moms!
Posted by Jane under Updates
[9] Comments
Hi there! We’re still waiting for the surgeons to conference on Ramona’s last cath. Rest assured, as soon as I have something concrete to share I will. Everything went fine and the results seem good, so we’ll see.
But I’m posting today to ask for some help from my fellow heart moms. I have reconnected with an old high school friend, Estrella Rosenberg, who is doing some amazing work for CHD advocacy. She lost a sister in infancy to HLHS and is passionately pursuing ways to help other children affected by CHD. She is working hard, funding studies, and generally being a squeaky wheel in order to create a standard where every child would be pulse-oxed before going home from the hospital. The obstacles, as I understand them, are mainly the cost (one-use sensors are expensive and reusable ones are often not suitable for infants) and red tape.
Ramona was diagnosed at two months old. She had many signs and symptoms of a heart defect, was in the hospital for four days at birth, saw her pediatrician over a dozen times and even had an echocardiogram before anyone put a pulse-ox on her. She was lucky. She lived long enough to receive care and is thriving. Many children are not so lucky. Many die before diagnosis, many die because the care they receive is too little, too late. About 1 in 100 children are born with a heart defect. Many of these defects are easily detectable with pulse-oximetry.
Estrella has asked me to collect stories from my fellow heart moms whose children were diagnosed after birth, either in the hospital after birth or later on after coming home first. If you feel comfortable sharing your story, please send it to janedeitrich—at—yahoo—dot—com (take that spambots!) or you can simply post your story in the comments below. Thanks so much. I am also looking for photos to be used in some of her publications. Photos of your heart kids at home, in the hospital, with their feeding tubes, with a trach, playing soccer, playing dress up.
Thanks for your help.
Also, I wanted to share the sad news that little Faith passed away this week. She was a beautiful girl, loved by her family and loved by God. You can leave messages of condolence here.
We were very blessed to have a in-utero diagnosis. I love what Estrella is advocating for. What a wonderful thing, and how beneficial this could be for babies (and therefore families). Thank you Estrella!!!
I would love to share our story, especially since Abby was not diagnosed until age 4, even with a whole myriad of “heart symptoms”
I will email you all the details in the coming days. Hope you are enjoying this wonderful extended spring here in Chicago. Bring on summer!! Eliza
Jane,
Please let me know if you want me to post this to the 22q11_chicagoland group. I’d be more than happy to.
Blessings to hear things are stable!
Hope to talk to you soon,
Trish
So glad that Ramona handled the procedure so well-what a little trooper. Am still praying that the Doctors can find the answers needed to help Ramona longterm. Your strength and determination are such an inspiration. And what your friend is working on doing for newborns is wonderful. Something so simple and noninvasive and can save so many lives should not be stopped b/c of cost. I pray that she and others continue to have the resolve to fight the good fight.
Take Care and hope we can see each other soon:)
Sharon
I’ll give the brief story, although there is much more to it. My daughter was diagnosed with TAPVR after birth (later, also diagnosed with coarctation of the aorta). We had a really rough delivery due to shoulder dystocia, so the NICU doctor just brushed off her cyanosis as a result of having to resuscitate her. The nursery nurse was taking her to the nursery with my husband and kept saying she was really uncomfortable with my daughter’s color. She got someone to draw her blood. It was dark. They checked her lungs first, which were fine. Then they did an echo and found she had supracardiac TAPVR. She was in surgery at another hospital within 21 hours of birth. We had been given multiple sonograms in the pregnancy because I was carrying her placenta low. Her heart always looked fine. TAPVR is VERY difficult to diagnose until the child takes their very own first breaths. Had it not been for the persistence of the nursery nurse, who knows how long she would have gone undiagnosed. She was our first child and we may not have realized something was wrong. The longer TAPVR goes undiagnosed, the more damage and thickening of the heart. Many kids in the TAPVR group that I was a member of weren’t diagnosed for upwards of two weeks. That is horrible. You are doing a good thing and I support your efforts.
Our son Rayne was born 5/21/98 at a whopping 7 lbs and 13 1/2 oz…21 inches long. Normal delivery..out of the hospital the next day. His color was good and there were no signs of any issues. I noticed when giving him his bath that when he was breathing he would suck in at the sides and cause a ridge in his ribs that was about as wide as my finger. My first child didn’t do this. At our 2 week check up pointed it out to the pediatrician and was blown off as “new” mom. At 6 week check up he was still doing it. Pointed it again…blown off! Made another appointment for the next week and took the hubby. Amazing…when he pointed it out, the doctor seemed concerned. Sent us to the hospital for x-rays. X-ray showed pnemonia. While in the hospital for “pnemonia” a nurse came in to listen to him and check him out. She started asking me a ton of questions – “Has he ever turned blue?” “Does he fall asleep when nursing?” “Does he seem lethargic?” All of my answers were No. Except for the weird breathing everything else was fine. She went to the doctor and insisted that they look at his heart. Apparently, she had to get very forceful with the doctor because he had just been in to look at my son and said he looked great. When they finally did the echo, we knew immediately that something was wrong. He stopped and called in another doctor. Then the two of them started talking in hushed tones. Diagnosis…Double-Inlet, Single Ventricle with TGA. My son had been in congestive heart failure since the day he was born…he was now 8 weeks old. They sent us to Children’s Hospital of Dallas and our whole world changed. At 9 weeks he had PA Band. You see, his lungs were being flooded with blood which his why is O2 sats were at 100%. At 5 months he had a Bi-Directional Glenn, Damus-Kaye-Stansil (DKS) and an Atrial Septoptomoy (sp?). At 2 years he had his Fonton. This little boy was being guarded by angels. We were told that because he was in congestive heart failure for 2 months, we could expect damage to his other organs. His lungs would be scarred because they had been flooded with blood. NONE of that happened. He was perfectly healthy, except for his “special” heart. We were also told that he would be small for his age and have some learning disabilities. I’m THRILLED to say that he just turned 11 years. He is 5’2″ tall and weighs 120 lbs. He can’t do everything that his friends do, but he keeps ups with them and does everything that is within his limits. He is walking, talking proof that God is with us and is working miracles every day.
God bless all of you who are reading this and have a “special” heart baby.
Thank You, Jesus, for the miracle You are manifasting in Rayne. Thank You for protecting him, for safeguarding his life and future with legions of Your heavenly warriors. You are truly the creator, ruler and Lord of all there is. JESUS LOVES THE LITTLE CHILDREN, ALL THE CHILDREN OF THE WORLD. Alleluia and Amen
My daughter, Lana, was born 12-13-06 at a healthy 9lbs and 1oz. We went home on Friday and had an appointment with the pediatrician Monday. I had had a horrible delivery *4th degree tears with an episotomy* and because of this I was recovering and was hardly able to walk much less care for a newborn. So, my mom took care of Lana while my husband nursed me. PPD set in and I was a wreck. I thought Lana’s breathing was not quite right. My family said everything was fine and it was just being a first time mommy. I wasn’t convinced and got on the internet. Of course, heart issues popped up, but she had none of the other symptoms. Monday at the ped I asked about the breathing and he reassured me that a newborn would breath like that trying to regulate the breathing. I accepted this because she was eating fine and nothing else seem out of the ordinary. We went on with life and Lana seemed fine, except the breathing. Finally, her 6 week check-up rolled around and we saw the other pediatrician in the practice. Lana was gaining weight but she had only gained to 10 pounds. Upon examining her the ped said she heard a murmur. I lost it. She assured me most murmurs were innocent and nothing to worry about. Plus, Lana was eating, gaining weight, and not blue. She sent us for an echocardiogram. Then we waited. The echo had to be sent to a nearby children’s hospital about 4 hours away for a pediatric card to read. After a week’s wait we went back to the ped to find out that yes, Lana had a VSD, but more disturbing was the coarctation of the aorta. Once again I was a basket case. The ped made an appointment with the pediatric cardiologist, which came to a nearby city every month. So, the following Wednesday we met with Dr. Wiles who told us that Lana would need surgery to repair the CoA. Lana was not 2 months old yet and the ped said surgery probably would not happen until she was at least 6 months old. But, Dr. Wiles said surgery should be as soon as possible. He said once he got back to the hospital he would discuss her case with the other cards and surgeon and call us with a date. Friday the hospital called and said the surgery could be the following Tuesday or Thursday. On February 13, 2007, the day Lana turned 2 months old, she was having surgery to repair the CoA. Thankfully it was not open heart but thoracic surgery. Lana did amazingly. The VSD closed after the CoA repair. She is a thriving 2 year old who keeps us running. She is on yearly visits with the card. We were fortunate that Lana’s defect was found before she became symptomatic, however, we wonder could it have been found at the hospital with a pulse ox test. So many families are not as fortunate as us.
Is Estrella still collecting stories? I’d be happy to share with her.