Calling all heart moms!

August 18, 2011 in Health Issues, Medical Provider, Post-Diagnosis Health

Does your unborn baby have a heart defect? Or are you an experienced mom who has faced her baby’s open-heart surgery? Many expectant parents are worried about the time period between birth and surgery. Many worry about the symptoms associated with heart defects, the medications, and feeding issues. Newborn hospital experiences may vary. Cardiologists may differ in their approaches to public outings and germ exposure. Expectant moms, what are your questions? Experienced moms, share your stories.

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21 Responses

  1. Nancy says:

    I wrote the following account shortly after our daughter’s open heart surgery. Although I believe our experience to be rather common, please remember that symptoms, complications, and recovery times may vary. Please make sure that you address any concerns with your nurse or doctor rather than relying on my account. (Especially the parts where I may not have followed doctor’s orders as closely as I should have!) I do wish you the best of luck!

    Prenatal Diagnosis

    We learned of our daughter’s dual diagnosis of Down syndrome (Trisomy 21) and AVSD on October 14th and 15th of 2004, at approximately 18 weeks gestation, through an amnio and echocardiogram. This information was of course very shocking and scary, and we feared for our daughter’s life despite calm assurances from our cardiologist that this surgery carried with it a stellar success rate. Despite the good prognosis, there is just something about those words, “heart defect,” “open heart surgery,” and “hole in the heart.” It seems overwhelming.

    After our initial shock wore off, we were able to do research, and the more we learned the better we felt. Although AVSDs do not close on their own, we learned that Children’s Hospital of Philadelphia (CHOP) is the top children’s hospital in the country, that the cardio-thoracic surgeons perform daily heart surgeries, and that they perform AVSD repairs twice a week. Our pre-natal panic was quickly turning into relief that we were lucky enough to have CHOP in our backyard. In addition, I was able to get in touch with other parents whose children had AVSD repairs on the on-line Down syndrome support boards. Most parents said their children did amazingly well after the surgery.

    During my pregnancy, we also had time to switch our insurance company (which saved us thousands of dollars), tour the cardiac floor, and meet with the cardiac lactation consultant at CHOP to develop a plan for breastfeeding. Additionally, our cardiologist was able to monitor the baby’s heart with several echocardiograms. If no complications developed, we would be able to deliver the baby at our local hospital with our regular obstetrician.

    Presurgical Experience

    Our baby, Gabriella Louise, was born on March 1, 2005. My cardiologist had recommended the baby be on breast-milk long-term, and I had nursed three children previously, so I was determined to nurse Gabriella. Unfortunately, she was not interested. Around-the-clock pumping was difficult, but I continued it for many weeks. I stopped trying to breastfeed when she was only 9 days old because she would cry when I tried. Instead, we gave her breast milk in a bottle, fortified directly with high-calorie powdered formula at a ratio my cardiologist recommended. It took a very long time to feed Gabriella a bottle, and she rarely ate the full three ounces. I eventually stopped pumping at night, and eventually stopped feeding her in the middle of the night due to sheer exhaustion. I worried about her total calories, but taking an hour at 2:00 A.M. to give her an ounce just wasn’t worth it. At two weeks of age, she was consuming an average of 14 ounces a day. This steadily increased to over 17 ounces at 6 weeks of age, but then dropped down to 14 to 16 ounces a day. Her original birth weight of 5 pounds, 6 ounces increased to 6 pounds, 1 ounce (2 weeks), 7 pounds, 6 ounces (6 weeks), 8 pounds, 9 ounces (12 weeks). I was actually very happy with this weight gain considering that we expected her to do much more poorly.

    When Gabriella was 8 weeks old, things changed dramatically. She started sucking on my neck, so I just put her to my breast. She nursed! I couldn’t believe it. I was so excited – I told everyone. I thought it was a “one time deal,” but she did it the next day, then the next, then twice a day, then more. Just after turning three months old, she drank her last bottle. We had gone to a wedding, and while we were gone she gave my mom a really hard time about drinking her bottles. I felt like she was already exceeding expectations, even at 2 months of age, like she could do anything. I was just so proud. My cardiologist, though impressed, did ask me to continue to try to give her a bottle, so that we could get some extra calories into her, and so that she would be used to a bottle for her hospital visit. I really did try, but by then Gabriella was accepting no substitutes.

    After this switch to breastfeeding, a short bout with bronchitis, and the discovery that she had gone from HYPOthyroid to HYPERthyroid, Gabriella’s weight gain tapered off. By the time of her surgery at 5 months of age, she weighed only 9 1/2 pounds. At that age, she was sleeping through the night in a very deep sleep, and staying up most of the day except for cat naps (what happened to the “sleep all day” baby they promised me?). She would nurse well, but not once she “passed out” for the night. She was very active, meeting most of the usual developmental milestones, including rolling over both ways by 4 ½ months. She was “baby talking,” smiling, laughing, and fascinated by strangers. Following our cardiologist’s orders, we’d been pretty much home since her birth, venturing out with her only to medical appointments.

    We had thought Gabriella would have more symptoms, like excessive sleeping, sweating while eating, labored breathing, turning blue, weight loss, lots of illnesses. Except for trouble gaining weight, she remained asymptomatic. As the time for surgery drew closer, I was so nervous that she would get sick and we’d lose our surgery date. Thankfully, she stayed healthy and we were on target for surgery. (She did start sweating on her neck while eating, but not that much, and her back while sleeping, but again not as much as I expected.)

    Surgery Experience

    Gabriella had her surgery on Monday, August 1, 2005. Having done a lot of research, I wasn’t too nervous, but my nonchalance was a bit ruffled when they actually came to take her. My husband and I wanted to grab her and run! The surgery was fairly quick, lasting only a little over two hours, with additional time for prep and anesthesia.

    We were fine waiting, but the first time seeing her was a bit unsettling. I had expected tubes, but there were so many! They came out over time, one by one, and she was “free” enough to breastfeed that night around 10 p.m. Amazing isn’t it? Of course, most of the doctors and nurses said I could not nurse her because they wanted to see how well she was eating by seeing the ounces, but I have found out with medical professionals that if you don’t like an answer you just ask the next person on duty. So the intensivist (my new word) who was on duty at 10 finally said, “I don’t see why not – the bed is at the height of your breast, so roll her on her side and try it.” And it worked! The next day, so she eating like a champ, and more tubes were being removed. She was still on a little morphine, and slept a lot.

    At this point, she was in the CICU, with four beds to a three-walled room (called a pod) open to the nurse’s station. Most of the babies were newborns, and I didn’t meet any parents who said their kids had Down syndrome. She actually looked big in comparison to the other babies. At first, she had a nurse all to herself, but as time passed, there were two patients to a nurse. There were medical people constantly on hand.

    By the wee hours of Wednesday morning, Gabriella wanted to nurse at 4:00 A.M. (fun for me, after having a sleepy nighttime baby for five months!) More tubes came out on Wednesday, and she was alert and happy. Pain management was strictly regular Tylenol at that point. By late Wednesday morning, less than 48 hours after surgery, she was ready to “step-down” to a regular hospital room. Here there were visits from a nurse, but really I was her caregiver again. She was happy, laughing, baby-talking, constantly getting herself mixed up in all of her monitor wires. We had some visitors, first three friends of mine from high school, and then my husband and the other kids. They had “sand art” for the kids, toys, and things to explore, so the kids probably wanted Gabriella to have an operation every week. That night, I slept on a couch next to her bed, which I very much preferred to the CICU arrangements.

    By the next morning on Thursday, we had the word – she was to be released that day. We left at 1:00, a full three days since surgery. Yes, three days after invasive open heart surgery, we were leaving with a happy, energetic, adorable baby. I even asked the nurse if she was a “miracle baby.” The nurse calmly said, “No. A lot of babies leave after three days.” As people said, “She’s so cute,” in the elevators, I wanted to shout, “Open Heart Surgery – three days ago!” but I didn’t. I just smiled.

    It’s been ten days since surgery, and she had her stitches taken out yesterday. The incision itself has no stitches – they used “subcutaneous” stitches, so it looks like a razor-thin line, not like the Frankenstein criss-cross we all imagine. The stitches removed were where the chest-tube came out, just below the incision, and on her right wrist where the artery line ran. She has grown and gained so much weight in such a short period of time, and her appetite since the surgery has been tremendous.

    I keep thinking of my fear when we heard the prenatal diagnosis of a heart defect. I worried SO MUCH. Talking to “heart moms” on the Down syndrome support boards helped to calm my worries so much, and I was very calm going in to the surgery, but I still did not expect it to be so very – oh what is the word? I think maybe “pleasantly anticlimactic” is the appropriate phrase here. Anyone who is worried about their child’s diagnosis of AVSD (sometimes called complete AV Canal defect) should be aware that the fear I had after hearing that news was grossly out of proportion to the reality. Still, I am glad it is OVER and I can enjoy my healthy baby who at the rate she’s now eating will be HUGE by Christmas!

  2. Melissa says:

    We learned about Rowenna’s heart condition 36 hours after she was born. She had a Complete Atrialventricular Canal (also known as a CAVC or AVSD).

    We spent 2 weeks in the NICU while doctors monitored Rowenna’s heart. It is so hard to think about now – we were waiting for her to go into heart failure. Looking at my tiny bundle in her isolette and knowing her heart was working too hard was very difficult. In another way, though, it helped me to work with the Down syndrome diagnosis. There was definitely a feeling of “Well, who cares about this Down syndrome thing? My baby needs heart surgery.” While in the NICU we also worked with Rowenna on eating. We tried to get her to nurse but she would get so tired at her feedings that we made the extremely difficult decision to switch to a bottle. At the time, it felt like one more thing being taken away from me, but I know now it was a good decision for my daughter. When we left the NICU, she was taking some milk by mouth and some through an NG tube.

    We were told to keep a schedule of feeding her every 3 hours, 24 hours a day. I would pump every three hours and my husband would feed her. Those were long days for us.

    Two weeks after we got home, Rowenna caught a cold (before we had even taken her anywhere or introduced her to anyone!) and we spent another 5 days in the hospital when the infection put her further into heart failure.

    Over the next 3 months, we lived as normal a life as possible. Our cardiologist and pediatrician both stressed the importance of getting out of the house and remembering that she was just a baby first and foremost. Yes, she had a heart condition but her doctors felt she needed to leave the house and still do some normal things. They also felt that as parents we needed some normalcy in order to be the best parents possible for Rowenna. It was summer, though, so I am not sure if that contributed to our doctors’ advice to take her out into the world. As I write this it’s the beginning of cold and flu season and we’ve been told to keep her home as much as we can.

    I wore her in a Moby wrap whenever we were in a crowd. I never once had a stranger try to touch her while she was in the wrap. We went shopping, to county fairs, festivals, and even went camping. We visited with family. We were vigilent about handwashing and using hand sanitizer. It felt good to be out and about!

    Rowenna was a pretty typical baby. She smiled and babbled and tried out all her physical skills – reaching for toys, tummy time, trying to roll. She loved to snuggle. Aside from her NG tube, there weren’t really a lot of signs that something was wrong on the inside.

    When Rowenna was about 3 months old, her heart condition really began to take its toll. She became very pale and tired. She stopped enjoying tummy time and began to sleep almost constantly. She also stopped eating by mouth (getting about a half ounce at a feeding would be a huge accomplishment). Her cardiologist decided it was time for surgery.

    When we got the call with our surgery date, I completely lost it. I cried all afternoon. It felt so real. I would have to hand my baby over to the doctors and I would have no control over what happened next. We were told to stay home and keep her as germ free as possible.

    We spent the next two weeks just loving on our little girl and getting things in order for after surgery. I cleaned the house from top to bottom and we stocked up on groceries and things so I could stay home after surgery.

    Two days before surgery we met her surgeon. He immediately put us at ease. He had obviously carefully reviewed Rowenna’s case and spoke to us about the specifics that pertained to her. He talked about the possibility of some complications (she had a very large VSD and some chordal attachments) and what to expect from recovery. The day before surgery she had some basic tests. The night before surgery I sat up and watched her sleep.

    The morning of surgery we met the surgical team and went over the procedure again. I didn’t cry. I felt like I wanted Rowenna to see me smiling and calm. The doctor carried Rowenna in her arms into the OR and for some reason that made me feel so good. My baby was snuggled right until she went under.

    That was the longest day of my life. We sat in the waiting room with my parents and brother. Every hour on the hour a nurse would update us. She was amazing. She even brought out a little piece of the material they were using to patch her heart! That helped me to picture what was happening. After surgery, they wheeled Rowenna into a hallway on the way to her ICU room and we were able to get a quick peak at her. She was already awake and looking around! My baby was going to be ok!

    We stayed at the Ronald McDonald House the night before her surgery and the night after. Then we stayed in her room with her. The hospital were at had a great set-up for parents – showers, laundry, room service, DVDs, wireless internet. They really did everything they could to make us comfortable.

    Rowenna recovered well. She never needed her pacing wires. She was already extubated (breathing tube out) before she left the OR. The next day she was waving her arms and legs around and trying to coo. Two days later they took her chest tube, catheter, and pacing wires out and she was able to flip onto her side. She was now taking only Tylenol as needed for discomfort. She was back to taking only the meds she had before surgery and they were taken by mouth. On the third day they took her central line out. By then, she was down to just a little bit of oxygen and one IV line.

    She did continue to struggle with eating and I did have my first experience standing up to a doctor on behalf of my child. Even though she was cooing and smiling and wiggling, Rowenna had no interest in being held. She would cry whenever we tried to hold her. This was very hard for us! When speech came to do a consult, Rowenna cried through the entire session and refused to eat. Based on that, they made the recommendation to keep her in the hospital for 2 weeks and put a g-tube in. I firmly stood my ground. Rowenna didn’t want to be held – of course she cried while speech therapy held her and tried to get her to take a bottle. I fought and fought to take her home. Finally the doctors admitted there were no cardiac reasons to keep her in the hospital. Her cardiologist got involved and said he would be willing to manage her feeding from home, and the next day we were discharged!

    Rowenna had a major oral aversion at this point. She would not even suck her own thumb! We could not touch her face. Working with our speech therapist at home, we were able to slowly encourage her to allow things near and in her mouth. It took about a month after surgery, but she finally got to the point where she took whole bottles by mouth. Now she likes to eat so much that she’ll pull the bottle into her mouth and “help” hold it.

    Now, you would never know Rowenna ever had a heart condition (unless you see her scar!). She is perky and pink and plump. She is absolutely gorgeous. She is still the mellow kid she was before, and still sleeps through the night, but she just has a little more…zing. I am so proud of her! We went from weekly doctor visits and weigh ins to monthly visits. In time, we’ll go every 6 months and eventually once a year.

    The heart condition was scary, but I found a great deal of peace in talking to other “heart moms” and having doctors who were so very supportive of our family. Nothing could have made me stop worrying before her surgery, but it helped to know we weren’t alone!

  3. Missy says:

    I suppose I too am a “heart mom.” My daughter has three minor heart defects (and the words “minor” and “heart defect” always seem a bit of an oxymoron to me! When it is your baby with a heart defect it seems MAJOR!)

    On our prenatal fetal echocardiogram (where they do a careful inspection of her heart), she was given an all clear. On the echo after she was born the minor defects came up. Because of the nature of the issues, she didn’t require any sort of surgical intervention, didn’t take any medications. She was monitored every six months, then 2 times a year. Two of the three have resolved themselves as she has grown. Last year, her heart doctor (cardiologist) said she wouldn’t need any surgery (if she had it wouldn’t have been open heart surgery, they would have done a procedure through her leg.)

    Not every baby with Down syndrome has heart issues. The vast majority of the children who do require surgery do very very well, and thank goodness the interventions that they can do have extended the life expectancies of individuals with Down syndrome!

  4. Shannon says:

    Ava was diagnosed with AV Canal defect at one week of age. She had surgery to repair it at almost three months old. When she was two years old, they discovered she needed another surgery because of an unexpected problem (her LVOT was getting blocked and she had some mitral valve regurgitation). That was repaired and we actually had a slight complication from that and had to have another heart surgery really quickly after the second one. Since then she has been fine.

    To us, her first heart surgery was very much a relief. She wasn’t eating much at all. Afterwards, we still had some problems with her eating, but not nearly what we had before. Heart surgery wasn’t nearly the scary thing I set up for myself. Like I said, we have done it three times now and it isn’t in the ‘hardest thing I have done as a mother’. I certainly wouldn’t wish it on anyone, but I was pleasantly surprised at home ‘easy’ it was. It did help that we had a great support system and great doctors to work with.

  5. Karyn says:

    My daughter is about to turn 5. She is a healthy, active, beautiful girl who has Down Syndrome. She was born with AVSD with a large ASD and three VSD’s.

    She went into heart failure soon after birth and had heart surgery at 4 1/2 months and has never looked back.

    Because of her heart defect she had to be tube fed and it did take a while before she was able to eat but you would never know now.

    Heart surgery is really tough. But when I found out initially that she had a heart defect – at about 19 weeks pregnant – the first thing I did was ask if it was repairable and in fact they do that type of heart surgery every day. We were actually given quite negative information initially but the reality has been that our daughter has come through really well and is continuing to thrive.

  6. Kathy says:

    We didn’t know Mitch had Down syndrome until he was 20 minutes old. We thought that was catastrophic, until the cardiologist came in and said he also had a heart defect! And then they sent us home!! I was not ready to go home!

    Everyone kept telling me to calm down. The doctors kept telling me what signs to look for. I was confused, scared and wanted them to just fix it!

    On my birthday (he wasn’t even 2 months old yet), I knew something wasn’t right. We’d visited the pediatrician at least 3 times a week. This particular day, he wouldn’t eat at all. He just wanted to sleep. I brought him into the pediatrician who could tell right away that he was in heart failure. I remember it was supposed to freeze in Atlanta that weekend and after going into the ER, they stablized him, put an NG tube into his nose and said to take him home and get more weight on him. I was aghast!!! What if something happened? We’d never get back to the hospital because of the ice! They assured me he was fine, gave us instructions to put the tube back in, in case he pulled it out, and sent us home. That was the worst weekend EVER!!

    We made it through that weekend, through the surgery on Monday and through 6 more months, But his mitral valve was leaky, so that had to be repaired when he turned 8 months. Just as scary, but once all of these repairs were done, we had ourselves a new and improved boy!! My husband jokes to this day that Dr. Tam replaced his heart with a bionic one! Mitch is the most energetic, curious, fiesty boy.

    And I love him with all of my heart and soul!!!! He’s amazing!

  7. Ilisa says:

    My son, Calvin, was diagnosed with a Complete AV Canal defect when I was about 28 weeks pregnant. This diagnosis led us to the amnio which diagnosed him with Ds. Talk about overwhelming! I cried a lot and I have to admit, I wasn’t sure which diagnosis was harder to accept. Well, I know now: the heart condition.

    As I type this, I am sitting in the hospital room, four days post OHS. Calvin is doing excellent. He did pretty well before surgery as well. He was definitely affected: lower energy, thickened feeds as not to overwhelm him, fast breathing, retraction, and doctor appointments. However, he did start to eat fairly well and gained 3 pounds in his short 3.5 months of life pre OHS.

    Calvin has been recovering nicely and will likely be home before 1 week post OHS. His breathing has improved and he seems happier. And that leads me to feel relief; much needed relief. He is a joy. I feel blessed that we can now move on to nursing and a life with a boy who can thrive.

    I have not let his heart condition deter me from what I felt is best for him: breast-milk and nursing. Granted, neither is the easiest method of nutrition in this situation, but I feel it is best, so I have stuck with it. Lots of determination, patience, help, and pumping and we’re getting there. He is worth it all because I love him so much! He is wonderful!

  8. Lucy was diagnosed at one day old with a Complete AV Canal. The following is a repost of a blog I wrote last year, as part of 31 for 21:

    The Mommy sat in the waiting room of a cardiologist’s office. She had been a Mommy for less than four days. She carried a soft, delicate, pink bundle that weighed less than six pounds. The bundle, the baby, was the reason the Mommy was at the cardiologist’s office. The baby, so tiny, so delicate, so vulnerable, had a heart that hadn’t been formed properly. It was missing a valve, and it had holes where there shouldn’t be holes. The pretty pink bundle was so serene, though, you’d never know by looking that there was something so devastatingly wrong with her. That there was something so terrifying about her. It may not be obvious to those who looked at her, but that Mommy surely was terrified.

    The Mommy looked around the waiting room, and thought, “I’m definitely going to become familiar with this place.” It was not a happy thought.

    Finally, the family was called in, and the Mommy took the small, beautiful pink bundle in for her first cardiologist visit. Weigh in. EKG. Exam. A routine that the Mommy and the baby would endure together many, many times in the months ahead. The doctor drew pictures for the Mommy and the Daddy, so that they would know what exactly was wrong with the baby’s tiny heart.

    They say that your heart is the size of your fist. The next time you are near a six pound baby, look at her fist. This was the size of the heart that the doctor was talking about to the Mommy and Daddy.

    The Mommy kept trying to ask questions. She wanted to know what she had to do to help the baby be strong. The questions kept getting stuck in her throat. She tried to ask the doctor what she could do to keep that tiny, beautiful pink baby from dying. She could not get the words out and cried.

    The doctor told the family that the baby would need surgery to repair her tiny heart. She would need this surgery before her first birthday. They needed to help the baby gain weight and be strong. The doctor set a surgery goal–Three months old or 10lbs, whichever came first. The doctor told the family all the symptoms of heart failure and how to watch for them. He told them that most would be evident during feeding time. One of the most strenuous activities a newborn does is eat. If the little baby was in heart failure, the family would surely see it when she was taking a bottle.

    The Mommy took the baby home and tried not to cry every moment of every day. She tried not to feel afraid. She tried to sleep. She tried to give the baby her bottle, but it was so scary to the Mommy that she often let the Daddy feed the baby. The Mommy could not enjoy the warm, cuddly, bonding time of feeding a newborn, because she had to be ever vigilant. Was the baby sweating? Was the baby turning blue? Was the baby struggling to breath? The Mommy became obsessed with what the baby ate. She kept a chart to make sure the baby was taking enough calories during the day. She hated to let other people feed the baby, because what if the other person did not know what heart failure symptoms looked like? What if the baby did not take all of her bottle and missed out on precious calories? What if the baby died? What if the Mommy wasn’t a good enough Mommy to protect this beautiful, delicate, vulnerable, pink baby from those destructive holes in her heart?

    The Mommy felt that she was the only one who could protect this baby. The Mommy was probably silly to think that, but what else could the Mommy do? This was her baby. Her first baby. Her tiny, delicate, fragile, vulnerable baby. No one seemed to understand this, and the Mommy felt incredibly alone.

    People told the Mommy she was overprotective, some lovingly, some critically. The Mommy felt angry at that. The Mommy was just so desperate to keep that tiny, delicate, fragile, beautiful baby alive, to help her grow strong, so that one day soon, the Mommy would be able to hand that tiny, delicate, fragile beautiful baby over to a surgeon, who would cut her chest open.

    The knowledge and fear of the baby’s necessary surgery never left the Mommy’s mind. The Mommy never bought clothes too big for the baby, to be stored away for next summer, next spring, next fall, because there could be no plans for “after” the baby’s surgery. There was no life to be considered “after” the baby’s surgery. When the Daddy would say, “We’ll do _______ next summer”, the Mommy would just nod along, thinking only of the surgery. The Mommy dared not to hope that far in advance.

    The Mommy would say calming things to others; talk about how skilled the surgeons at the hospital were, how “routine” this surgery has become, how confident she felt in her doctor’s care. The Mommy did not always feel those calming things in her heart. The Mommy just felt scared and alone.

    As the days and weeks and months past, the tiny, fragile, vulnerable, pink bundle began to grow and become strong. She mastered the art of taking her bottle. She learned to hold her head up. She smiled, and laughed, and cooed, and babbled. She made everyone fall in love with her. She helped heal the Mommy’s heart, but the Mommy could never stop worrying about the baby’s heart. No matter how happy the Mommy felt playing with the baby, no matter how big and strong the baby was becoming, the Mommy could not forget that someday soon, a surgeon was going to operate on this baby’s tiny, fragile, delicate heart.

    The baby passed 10lbs. The baby passed 3 months old. She never turned blue. She only sweated a little bit. She grew strong and happy. At Christmas, when the baby was six months old, the Mommy bought her clothes that would not fit her until spring. The Mommy was finally learning to see an “after”.

    The day came. The day the Mommy had feared was finally there. The Mommy felt more hope than she had ever dared to let herself feel, but there was still the hugest fear to face, the hardest challenge to overcome.

    The morning of the operation, the baby was not allowed to eat. The morning was interminably long. The baby was hungry, and cried. The Mommy was afraid that if the baby died during the operation, that her last thoughts would be, “Why didn’t Mommy feed me?” This made the Mommy cry more.

    The Mommy found herself in a waiting room again. This time when they called the baby’s name, it would not be for an EKG and an exam. It would be to go down to the OR.

    They called the baby’s name.

    The Mommy and Daddy were able to carry the beautiful, fragile, vulnerable baby to the operating room. The hall was longer than any hallway the Mommy had ever walked down. At the door to the OR, the Mommy and Daddy got to hug and kiss the beautiful baby. They told the baby they loved her. They told her they’d see her soon. They told her to be strong. They told her goodbye.

    It has been one year, eight months, and 11 days since the Mommy and Daddy handed their beautiful, fragile, vulnerable baby over to strangers in white scrubs. There is nothing fragile or vulnerable about that baby anymore. There is nothing “baby” about that baby anymore. She is a strong, spunky, spirited, happy little girl. The Mommy thinks about the future of the little girl every day. The Mommy is proud of both of them, for getting past those darkest days.


    Nearly half of all children born with Down syndrome will be diagnosed with a congenital heart defect. Half of those diagnoses will be a Complete Atrioventricular Canal, which is the defect Lucy was born with.

    She had surgery on January 28, 2008 at the Children’s Hospital at Columbia-Presbyterian Hospital in NY. She was just shy of 7 months old. We spent 8 days in the hospital.

  9. Dawn says:

    We learned of our daughter’s cardiac defect at exactly 14 days old. She was delivered at a very small hospital and my one regret was that she didn’t have an echo done before we left. Although her defect was minor, it affected her very greatly. Feeding was an issue. It took about 4 days for me to get her to learn to breastfeed, and at one month old I turned to pumping exclusively because she was not gaining weight.
    We added human milk fortifier to her milk, and at times we also added corn syrup and oil for calories. She slept 23.5hrs a day and waking her for feedings was difficult. She had open heart surgery at 4.5months and although that sounds scary, and it WAS, it was the best thing. It was like someone flipped a switch and we had a REAL baby who cried, fussed, and cooed and smiled. These are all things she couldn’t do before because she was so tired.
    Although handing your child over for surgery is something no one should have to do, it really was a turning point for her. We were in the hospital for 7 days total, only because she was so little. We just had a 6 month follow up with her cardiologist and he had to look twice, he thought he was in the wrong patient room because her scar is so hard to see.
    She has been knocked back further with a bad cold than she was with heart surgery. She handled it like a champ.
    She is now our attitude-filled little girl! I am so thankful that we live in a time where her defect could be repaired, and that we are close to one of the best hospitals in the world for pediatric open heart surgery, Boston Children’s.

  10. nancy says:

    Some moms on our discussion board pointed out this great resource:

  11. Annie says:

    Here is a link to our story. We knew prenatally that Ollie needed open heart surgery for an AV canal between 3-6 months of age. She had OHS in June of this year a day before she turned 4 months old.

    OHS was terrifying prenatally & even with a newborn. However, 2 months post surgery I can say it was a wonderful experience. Our daughter is now thriving & growing & we have new perspectives on the important things in life.

  12. ch says:

    My son and daughter each had complete AV canal defects repaired at the age of 4 months. My daughter also required feeding tube assistance for 2 years related to heart defect. Feel free to visit our blog…our heart surgery links are posted in our side bar and our address is, too. We love to hear from new heart families and are happy to answer any questions you may have.

  13. Heidi Ehle says:

    Just wanted to say that we just got through OHS a little over a month ago with our now 7 month daughter. I am always, always happy to speak with anyone and offer support. Our story is on our blog….

    Feel free to contact me any time. :)

  14. Michelle says:

    My little girl Sinead was diagnosed with her heart defect ante natally. I was lucky to live in Birmingham UK as we have one of the best fetal medician units. I was monitored very closely from 20weeks into my pregnancy not only for her heart conditon but her growth so I was scanned nearly every 2 weeks.
    Sinead was born 18th March 2011 via an emergency c-section as she was a transverse breech baby. she weighed just 4lb 13OZ soon after birth Sinead was taken to the NICU where she was put on a drip of prostine as she needed surgery to repair an narrowing in her arota and she needed a Pulmonary Artery Band to ristrict the blood flow to her lung to prevent damage. The day after Birth Sinead was transfered to the Birmingham Childrens Hospital where she spent 3week in HDU whilst waiting for her operation. For the 1st 8 days of life Sinead was only fed via a drip as surgery was ment to take place soon after birth however she had developed clotting problems and a hepatic heamangioma which is a collection of blood vessels in the liver which form a mass.
    On 7thApril 2011 at 09:30 the moment had finally arrived my little angel was going to have her 1st surgery. I waited until Sinead was under her anisthetic and kissed her goodbye that for me was one of the hardest things to do as she was so tiny and looked so vulnerable. Once I said goodbye to Sinead I knew I had to do something to pass the 6hours or else I wud have gone out of my mind with worry.I took myself off to have lunch with my best friends then went home for a little nap.
    At 3pm I began to get worried about not hearing from the hospital so went back to find out if there was any news when I got to the hospital Sinead was just been settled into PICCU I felt so nervous about seeing her as I knew she wud be have loads tubes and wires coming out of her and her chest was left open for 24hours.
    before surgery Sinead had prolonged jaundice but the 1st thing everyone noticed was how pink she looked now since being on by-pass. Her heamangioma had spontaniously corrected itself.
    The next morning the suregons came round and decided she was doing so well that they cud close her chest upand then slowly start to wean her off her tubes and levels of sedation. on day 2 post op she had chest drains out and was been weaned off the ventilator at 1st she needed to go onto bubble cpap to give her minimal help with breathing. The next day she was moved to the HDU unit on the cardiac ward. The pacing wires came out on day 7 post op the only issue now was feeding.
    Sinead is nasogastricly fed and has been since she was 8 days old.
    Sinead finally went home on 19th April 2011 since which time she has had regular cardiology check ups as she still has a complete AVSD with 2 futher holes either side of the AVSD. At the moment Sinead is 5months old 2day she weighs 10lb3oz and is still waiting to get to a reasonable weight before the hospital will carry out a cardiac catheter and decide what the next plan of action will be to repair the AVSD.

    The Birmingham Childrens Hospital have really helped us through this tough time and I have experienced lots of support both during Sineads time in hospital and ante-natally.

  15. Megan says:

    We had a very early prenatal heart diagnosis (around 17 weeks). Ellie had surgery just shy of 6 months, and began showing signs of heart failure about 3 weeks before surgery. We have a link to our surgery posts in our blog ( and Ellie was out in 4 days.

  16. Leah says:

    Cora had a birth diagnosis and AV canal repair at just shy of 12 weeks. By the time of her surgery she was in significant heart failure. The surgery was a complete success. I’ve recently compiled some of the heart stories on my blog here, including our own:

  17. Penny Green says:

    It seems no-one has thought to highlight our organisation which is specifically for the heart families. We have parent friendly info on what to expect, the different common heart defects etc. and our website has our newsletters which include families stories and experiences.

    Although UK based, we always try to help wherever a family is and we have an online mailing list and Facebook presence.

  18. nancy says:

    That would be the Down’s Heart Group:

  19. Erin says:

    We had our experience when our daughter was 6 months. She’s now 2. We blogged about her progress at She was one of the “10%” that didn’t go well. We were in the hospital for 52 unexpected days. She’s doing great today but will have to have surgery down the road. She has moderate leakage back into the heart at her mitral valve.

  20. Katie says:

    Anyone out there whose baby had Tetralogy of Fallot? Experience with surgery and NICU?

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