Little family heart story submitted by heart mom Ashlie Little.

We found out at 20 weeks that our son was going to be born with half a heart, Hypoplastic Left Heart Syndrome. We were able to prepare before he was born and he was born on February 22, 2005. He was rushed over to Primary Children's Medical Center and had his first surgery when he was 3 days old.

He was so small they had to keep his chest open because of the swelling in his chest. He recovered amazingly. He was sent home at 2 1/2 weeks old. We went back to the hospital because there was blood in his stool. He had necrotizing entorcolitis, we then had to stay at the hospital for another 2 weeks. Luckily no surgery was needed. He had his 2nd surgery when he was 3 months old he was out of the hospital in 5 days what a miracle to be in and out of the hospital with heart surgery in 5 days. We then had to go back for a post surgery check up and like with his first surgery he had another side effect from his 2nd surgery, Chilothorax. We were hospitalized for 2 1/2 weeks and that involved a lung surgery. We were home free for about 6 months when we took him to the ER because of swelling in his face. He was in heart failure. His echo showed that his heart was not pumping properly, only his right atrium was working. To a normal person this is only 1/4 of a heart. He was put on the Heart Transplant list and we waited. While waiting in the ICU he caught RSV. This took him off the transplant list and we were told we had to wait till it was clear, it takes 6 weeks for RSV to clear in a healthy baby. We were devastated, our amazing little boy fought it off in 2 weeks and was able to be re-listed. We waited a total of 5 weeks and one day for his heart to arrive and he is doing fantastic. He is our little miracle and like it said in a book I read in the hospital; someone asked a mother if she would do it again, she responded, In a Heart Beat!!

Slevin family story submitted by heart mom Elayin Slevin.

My husband Jay and I were at our 20week ultrasound at Bethany Birthing Center admiring the little creature on the monitor when the tech started acting a bit weird. We were sent out to wait in the waiting room while the tech was “checking some things”. We were so scared because we knew that ‘something’ was going on as we didn’t think being told to wait in the waiting room was normal. We waited an excruciating 20 minutes or so when I finally went in and told the tech that he better tell us what was going on! He told us that when he was looking at our baby’s heart, the Left Ventrical looked like it was enlarged to be about the same size as the rest of the heart. He wanted to refer us the Phoenix Perinatal Associates, which are the leading specialists in Phoenix. This was Friday and our appointment was Monday. Talk about a VERY LONG weekend!

We went in to our appointment on Monday and after the Dr. took a look at the ultrasound, they confirmed that our baby had Hypoplastic Left Heart Syndrome. Our babies Left Ventrical was presenting enlarged instead of “shrunken”, however it was the same issue. . .the Left Ventrical would never be a functioning chamber.

We were given the three choices that most people in this situation get. . terminate the pregnancy, a three stage surgery, or heart transplant. We never considered terminating and felt that instead of waiting for a heart it would be more proactive to do the surgeries. This was devastating to us, however we felt that by keeping a positive attitude about it, our baby had the best chance of surviving. We did a lot of research about this heart defect and a lot of praying, and finally came to terms with what we would be dealing with once our baby was born.

Noah Jay Slevin was born on November 27, 2005. He was doing so well when he arrived, that they let him stay at Good Samaritan Hospital for the night before transferring him to Phoenix Children’s Hospital the next morning. He did pretty good his first day of life, but started having some issues towards evening, and when they couldn’t get in a pic-line, and I kept hearing my newborn scream and scream, we had to leave. When we got there the next morning we found that he had stopped breathing from the meds and he had been put on the ventilator. For the next four days it seemed so up and down. They were trying to get everything stabilized for his surgery.

They decided to do his surgery on December 2^nd. (We have a picture of the clock at 8:17 am when they took him.) It is pretty scary to let go of something so precious. I trusted his doctors completely, but I’ll never forget the feeling of kissing him good-bye, not knowing if we would ever see him alive again. They say that survival of the Norwood is 85%, however, that 15% seems so huge when you are talking about your baby.

The surgery went well and Noah started thriving after that! We were told by a few nurses that these heart babies sometimes have feeding issues and never breastfeed, however, after Noah failed his bottle feeding sessions with the speech therapist, I talked the Dr. into trying to let him breastfeed and he was a natural!! Noah proved all of those nurses wrong!! He is such a strong little baby. He was out of the hospital in two weeks, 6 days after being born and having open-heart surgery. It was sort of weird to finally be able to try and get to know Noah three weeks after he was born. We adjusted fairly quickly to giving him his meds and learning his schedule. I think it may have been easier for us to deal with as we had no prior knowledge of what raising a baby would be like. A lot of people ask me how we do it with his meds, and the dr's appts. etc. . . but really, you just do it! It's not like we have another alternative and every parent does what is best for their child!

Noah’s second surgery, the bi-directional glenn, was performed on March 22^nd. Like the first time, it was torture to let him go. I think worse, because the first time I didn’t know what it felt like to hold him in my arms, and nurse him and love on him. For the first surgery he was already on a ventilator and sedated. The second surgery I had to physically hand him over to the nurses while he looked at me. It was physically painful to have to that. (I’ve heard the 3^rd surgery is the worst for this, but we have two years to prepare for that).

Noah did great through the 2^nd surgery and despite developing a pneumothorax afterwards, he was out of the hospital 7 days after they operated!!

Noah is 7 months old now. He has two teeth, he’s a fat, rolly-polly baby, and he sits all by himself. He laughes and giggles and has just started saying Dadadadadadaa. He is so smart! I know how blessed we are to have such a healthy baby despite his having half a heart. I don’t know if it’s true, but I heard a rumor that 1 in 10 couples that find out their child has HLHS, terminates the pregnancy. If those people could see our son, I think that would change! Not that it’s been all candy canes and rainbows, but having our son is definitely worth the trials and we know that he is going to live a very rich and fulfilling life! Only God knows how long any of us have here on earth, but to us it doesn't matter. We just live each day at a time, and enjoy every second that we have with Noah!!

http://www.carepages.com/ServeCarePage?cpn=BabySlev

Hi! I’m Kaipo’i. Okay, it’s Kaipo’i Chace ‘Iolana-Clark. Oh geez, after today, I guess it’s Kaipo’i Chace Poliokekoa ‘Iolana-Clark. (I’ll have to thank my parents, grandma, and aunties later for tagging me with that one!) I want to thank you for spending this special occasion with me and my family. Wow! I’m a year old already. Seems like only yesterday that I was floating around in the womb oblivious to what lay ahead...

For those of you who may not know, I was born during a major celestial event. Last year the nine planets in our solar system were moving into the shape of an ellipse. This kind of thing doesn’t happen overnight. It took about a month for the planets to line up and another month for them to disperse. The culmination of this event was on May 6th, only 3 days after my birth. Just ask anyone who was working at the North Hawaii Community Hospital that weekend, and they’ll tell you it was a weekend for the record books. To begin with, I was born early Friday morning, May 3rd. My best friend Ryder Brown, was born the next day -- Saturday. On Sunday, there was another birth. Three babies with the same pediatrician and the same obstetrician all born with cardiac difficulties. The odds of all this is staggering. Fortunately, Ryder and I made it out of the hospital. Unfortunately, Sunday’s baby didn’t. (I hope it’ll be a very long time before the hospital staff or any families have to experience a weekend like that one. )

Needless to say, my birth was a major event. I was born at 4:10 a.m., and by 4:15 everyone knew there were problems. I was what used to be called a “blue baby.” Shortly after the doctor cut my cord, I started turning a remarkable shade of blue. By 6, I was on life support, and the NICU Transport Team was on it’s way from Kapiolani Women & Children’s Hospital in Honolulu. My Auntie Gail and Dr. Lee were there with us. They did the best they could to help my parents understand. My mom and dad were just beginning to learn how special I really was. They say they only remember bits and pieces of that morning. Mom says she understood words like “heart,” “Honolulu,” San Diego,” and “surgery,” but at that point they were just words, and they seemed to float around the hospital room unconnected and separate from her. My Dad says that he remembers the complete change of emotions. He stepped out of the room to call my big-big sister Kayla, and when he returned, he knew something was terribly wrong the minute he walked back in the door. His world, my world, our world had changed in minutes.

I was transported by helicopter to Oahu, and my parents and little-big sister Konane follwed me to Oahu that afternoon. (Mom had to be discharged from the hospital first!) They met with the doctors from the NICU at Kapiolani, and the medical terminology barrage began. Here’s what was made out in between: Holes in his heart. All internal organs not in “normal” location. Trying to make sure he has all his organs now. Has to be transported to San Diego immediately for surgery. Haven’t seen anything like him in over 10 years. Jet. Jet transport. It’s being scrambled out of Monterey right now. No. Only room for one parent to go. The others will have to stay here. Pack nothing bigger than a carry-on. We leave as soon as jet arrives. Nothing more we can do.

We arrived in San Diego at 5 in the morning (California time) on Sunday, May 5th. It was brutally cold and dark outside as they moved me from one isolette to another in order to transport me to the hospital by ambulance. My destination? Children’s Hospital & Health Center, NICU B. What we didn’t know was that this would be our home for the next month. We began with a barrage of invasive and non-invasive diagnostics in order to have a full understanding of just how special I really am. So, for those of you who have been waiting, here’s the whole shaboozie:

1. Dextrocardia (my heart is on the right)
2. Atrial Situs Inversus (the top 2 chambers of hy heart are reversed)
3. Multiple Ventricular Septal Defects (there are large holes in the wall that divides the lower 2 chambers of my heart, so I basically am working with one big ventricle or bottom chamber)
4. Double Outlet Right Ventricle (All my plumbing goes to the bottom right chamber only. Since it’s one big chamber anyway, this isn’t a problem. However, because everything is flowing to the right side, the left side isn’t being used or growing, so in November, we added Hypo-plastic Left Ventricle -- really small left chamber -- to the list too.)
5. Pulmonary Atresia (the blood flow to my lungs is blocked. This is why I turned blue and the only condition they are correcting with surgery!)
6. Abdominal Situs Inversus (all my internal organs are in opposite positions from where they are supposed to be – but they’re all there, and they all work just fine!)
7. 2 left lungs (your right lung has three chambers for air– your left lung has two – that’s the design. I have two lungs that both have only 2 chambers. The doctors found this one really interesting when they discovered it during a Bronchoscopy.)
8. Tracheobroncomalacia Right Lung (That means the main opening to my lung didn’t want to stay open on its own. This lung collapsed on me a few times, and it’s what kept me in the hospital much longer than originally anticipated, but it’s not a problem anymore.)

So after four days of every test possible, consultations, discussions among the cardiac team, discussions with members of the cardiac team, and telephone conversations between my mom and dad, the big consultation came. Mom met Dr. David Bichell, Director, Division of Cardiovascular Surgery at Children’s. The Big Kahuna. The Head Cheese. The Man himself was on the case. He was really nice and explained everything to my mom really well. He even drew pictures – most of the doctors did. Perhaps they drew them in order to help explain my unique design. Perhaps they drew them to see if they could. Perhaps a little of both. But Dr. Bichell drew an excellent picture and explained the Blalock-Taussig Shunt to my Mom. It was a routine procedure, and it would only be a temporary fix. It wouldn’t take more than 1 ½ hours. Knowing there wasn’t an option, Mom signed the consent and returned to her position–right by my side. I don’t remember the next day, but my Mom does. What was supposed to take 1-2 hours took 5. What was thought to be routine was far from it. Silly, Dr. Bichell, he didn’t realize just how unique I was until he got inside. It was a hard few days after that. I was heavily sedated and there was barely a space on my body that didn’t have a probe attached or line connected. But my mom stayed by my side, and eventually I opened my eyes and joined the world.

The cardiac recovery was actually pretty quick. Within a week of the surgery they were already talking about releasing me. That is, until I got Acid reflux and started collapsing a lung. That guaranteed me two more weeks of NICU detail. Despite the location and the set-backs, we had some pretty amazing moments – like when my mom got to hold me in her arms for the first time on Mother’s Day – or when Murray Olson RT Extraordinare went above and beyond the call of duty to help my mother keep her sanity -- or when Auntie Belle found out we were here, rented a car, showed up in San Diego, and refused to leave until we did. But we were persistent in getting me released -- knowing full well I would recover better at home, and eventually we got to roll out the door. I left with a bag full of medicines, a CPAP Unit for respiratory treatments, and a ng tube down my nose (feeding tube). I wasn’t eating as well as they wanted, but that’s hardly a problem anymore! After a week of hanging around for follow-up exams, we finally got on a plane to go home – home to my dad and little-big sister – home to Kona.

It took us a while to settle into a routine. After all, I guess with medicines four times a day, respiratory treatments every 6 hours -- sometimes every 3, and eating every two hours, I was just a little high maintenance. But life found it’s “normal” for us, and the summer came and went. Then, in November, 6 months after my first surgery, I returned to San Diego for the “Glenn” – the first stage of two for the permanent fix. This time I got to take a commercial plane with my mom and sister Konane. And once again, Dad had to stay behind and keep the home fires burning.

Compared to May, November was a breeze. The surgery went really well, and mom distinctly remembers Dr. Bichell’s first words: “Your son has a strong heart.” (By the way, she brought that home with her, and that’s where Poliokekoa came from. A new name for me courtesy of Dr. Bichell, Mom, Dad, Grandma, Auntie Delma, and Auntie Bea.) I only spent 6 days in the hospital, although it wasn’t all smooth sailing. Three days after my surgery, I had a seizure. They ran three different tests (EEG, CT, and MRI) to find out why, but nothing showed up -- all clear, except for, what’s that? Evidence of an old stroke in the right brain! What???? Because no one remembers seeing me have a stroke, everyone is just assuming it was an isolated incident, probably within hours of my first surgery – while I was still unconscious. (It became obvious when I started to crawl, and I dragged my left leg behind me like a rag, but a few weeks of physical therapy, and I was crawling all over the house!)

This time we had to hang around in town a little longer. It was pretty cool for the most part. My godparents, mom, sister, and I got to go to Sea World, and my big-big sister Kayla came down from Camarillo to stay with me twice, I got to be outside every day and see the blue sky, the trees, and the sun. But just before we were supposed to go home, I got the flu and ended up in the Emergency Room. I still passed my follow-up tests, flu and all, and got to go back home for Christmas – my first Christmas.

After the holidays, I had some follow-up appointments with neurology, and three EEG’s later, there was still no evidence of the seizure. Just another unique thing about me, I guess. (Let’s hope that’s an isolated incident too!) The good thing was they stopped giving me that horrible phenobarbital. That stuff tasted like @&$#! Does it really have to taste that bad? I mean, really. With all the chemists in the world, can’t someone make a better tasting barbiturate? But I digress.

I have one more surgery to go – this November is the “Fontan” step two of two. We’ll spend another month in San Diego, and maybe this time my Dad will get to go too! But hey, that’s six months away from now.

Now, it’s Spring , and I’m celebrating my first year. I am so very grateful to so many people – each one going above and beyond – each one making such a permanent, positive impact on our family.

• To Auntie Aero who helped my mom deliver me into this world on her own terms.

• To my Opa who was at the hospital before the team from Oahu, and Nana who helped Opa watch Konane while mom was in San Diego with me.

• To Auntie Gail and Dr. Lee who were there as a voice of sanity from the beginning and continue to take such wonderful care of me.

• To Grandpa and Auntie Holly who pitched in by spending time with Konane while mom was with me.

• To Grandma who helped with Konane and came to see me in San Diego.

• To my Dad for surviving a month alone with my sister Konane – not an easy task – and then another month just alone.

• To my sisters Kayla and Konane for showing me the healing touch of their love .

• To my Mom for soldiering through it all with me.

• To Dr. Bichell for having the amazing talent he does.

• To Murray Olson who took the time to reach out to my mom.

• To Auntie Belle and Uncle Eric whose undying love, support, and presence in both May and November earned them the job of Godparents.

• To Auntie Anna, Uncle Ken, and Ryder Brown – my soul mate – younger hanai brother – fellow cardiac kid and his amazing parents. For whatever reason, we are not alone in our journey.

• To everyone who said a prayer for me.

• To everyone who supported my family or wished me well.

• And finally, to God for creating such a unique individual.

I don’t know what the future holds for me yet. Will I do something amazing with my life because of this or in spite of it? Who knows, but I do know one thing, it’s been an amazing year – one filled with the most extreme highs and lows possible – and yet, this isn’t really the end of the story, is it? No, it’s just the beginning.


Mahalo nui loa for sharing this day,
and the past year,
with me.

Young family heart story submitted by heart mom Amanda Young.

The struggle of my beautiful little girl started long before her birth. At nineteen weeks and six days into my pregnancy I was told there was no way Merci would ever come here full term. I was fifty percent thinned and a fingertip dilated. I was on bedrest for the rest of my pregnancy and took tons of medication. The weeks creeped by like years!

Merci's birth was a miracle in its self. She was born at thirtyeight weeks and two days. She made it to full term and yet she still weighed only 5lbs. 14oz.! She was a tiny little thing to say the least.

The days that followed her birth were quite painful. They were almost like a bad dream that you just pray you are going to wake up from any minute. I relive them everyday when I look at my daughters sweet face and wonder what her future will hold.

An hour before discharge from the women's hospital in Tupelo , Ms, the discharging pediatrician came to our room and said that he heard a murmur and thought an echo would be needed. He said he really thought she was fine but just wanted to make sure. We were reassured that she would be fine and they would bring her back immediately following her echo.

My sweet little girl was never placed back in my arms that day or for several days to follow. Merci was sent a day and a half later to Lebonheur Children's Medical Center in Memphis,TN. She was accompanied by her little buddy Will Bales.

The moment we first walked into that ICU was when I realized that this was not a dream it was very real and my little girl I fought so hard to bring into this world was sick. She was a kind of sick that I couldn't fix. She was a kind of sick that would never go away.

As we entered the ICU my husband and I both panicked. There were at least ten doctors surrounding the incubator that held my five pound baby. They were literally arguing and debating what Merci's exact problem was. To us it looked like they were panicking and so we thought Merci was not going to make it or something. Then came a clear diagnosis. Our perfect little girl not only had a heart defect but several. She was born with Congenitally Corrected Transposition of the Great Arteries. She had three holes and sub-pulmonic stenosis. This basically means the bottom two chambers of her heart are backwards, and her pulmonary artery leading to her lungs is underdeveloped and has tissue growing in it.

The cardiologist who sat down with us and told us the news actually used drawings to help us better understand what Merci's heart looked like. If you have never had a heart baby and are not familiar with heart defect it is very hard to grasp it all and the picture thing surely helped!

Through all of these tests and many hours of monitoring Merci's condition, she remained stable. In fact, Merci's vitals were perfect. The doctors were baffled! They really expected her to need immediate intervention.

Merci was released from Lebonheur and sent home to grow. She went seven months before a surgery time was decided upon. Her records were sent to Ann Arbor,MI to C.S. Motts Children's Hospital. The world renowned Dr. Ed Bove would be reviewing her chart and would be performing her delicate operation.

We arrived in Ann Arbor, Mi on a cold snowy day in December. We went on the impression that she would be having the Double Switch operation. For Merci this would fix the biggest defect she has and is the only correction for CCTGA.

The morning of Dec. 15 , 2005 we took our little Merci to the holding area with heavy hearts. I had not slept at all the night before. I laid awake that night and just watched my Merci breathe. I wondered if I would ever be able to just lay next to her again.

As we sat there I felt an urgent need to meet the man who would be working on my daughters heart but was told it might not be possible. I was so restless and I guess in my heart I knew somehow that this was not going to work and Merci would not have the operation. Five minutes before my daughter was taken from my arms I got to meet Dr. Bove. He was nothing like I had imagined. He was a tall slender fellow with a very special glow about him. I asked Dr. Bove flat out if he was sure this surgery was what was best. It was then that I was told Merci had obstruction growing not only in her pulmonary artery but it had also attached to her pulmonary valve and it might make the surgery impossible.

The next few hours were the worst I have ever experienced. Several hours into the surgery we were told the Double Switch was impossible and they were going to patch her holes and remove all the obstruction they could. We were devastated and left wondering if she would make it through this.

A few hours later we got a call saying Merci was in the PICU and we could go and see her when we were ready. As we entered Merci's room I felt as if I was going to faint. The pain of seeing your child on a ventilator and unconscious is almost unbearable. So many times you wish you could take their place and the feelings of guilt are overwhelming. There are many days we as heart parents ask ourselves what we could have done to prevent this birth defect from happening.

Much to out surprise Merci was out of the PICU in one day and recovered very quickly. We were home four days before Christmas. I have to say we had already received our gift before we ever returned home! We got to keep our baby girl and what could be better??

The days that followed we very difficult for me as Merci's mother. I had so much to accept. Merci was not able to withstand full repair and this left us with much uncertainty. There are no perfect answers in her case. She is just going to be a touch and go case her entire life.

With all that said Merci at this point continues to thrive and she still baffles her doctors with her "perfect health". This will not always be the case and we as her parents have learned to accept this. What we cannot accept is that our daughter has to face such a serious problem for the rest of her life and yet so many people still have no clue what CHD even means. CHD's are a very serious problem and they continue to afflict more and more children's lives daily. This is an issue that needs to be addressed with all seriousness. There is much to be learned from these "Half Hearted Soldiers".

Today's post is from an email along with a heart story from heart mom Valerie Guerin.

Cora Louise Guerin
Diagnosed with Hypoplastic Left Heart Syndrome in utero at 20 weeks – amazing at one year old!

Picking up my daughter out of her crib every morning is a blessing and a gift for which we are continually grateful. Despite two hospitalizations and complications, Cora is reaching her first year as a happy, well adjusted baby with an incredibly sweet and loving disposition. At 7 months of age we celebrated the receipt of local and state declarations for Congenital Heart Defect Awareness Week, which we feel were a testament to the resilience and spirit of our daughter and other infants and children who so bravely live with congenital heart defects. Unfortunately, these declarations are not permanent and require reapplication each year. I contacted the office of our Congressman, Rush Holt, who agreed to support the backing of the Senate Bill H. RES. 305 when it reaches the floor for discussion. This specifies the goals of the Congenital Heart Information Network http://tchin.org) in creating awareness of congenital heart defects on a national, permanent level.

The fact that we were devastated and had no idea about Cora’s diagnosis is an example of the importance of CHD awareness. We were conscious of how family and friends would receive the news, and were blessed with tremendous support. We are sometimes saddened when we hear comments that are well meaning but show great misunderstanding of Cora’s situation, and at the same time understand that it can be incredibly difficult to digest. Perhaps more awareness would create less isolation for parents trying to allow their child to be “normal” in an abnormal situation.

Cora has endured unexpected hospitalizations and visits to the local emergency room along with her two surgeries. Through all her trials, Cora smiled continuously and has led by example with her courage. Upon her return home from her second surgery in December 2005, Cora gave up her nasogastric (feeding) tube and began to eat on her own. This was truly miraculous as she had absolutely given up on feeding by mouth for weeks before. We are also grateful to the excellent staff at the Children’s Hospital of Philadelphia for their amazing skills and support. We thank God for the daily miracle that is our daughter.

Valerie and Mark Guerin

Cora's story

At our 20 week ultrasound we were told we were having a girl. Ten minutes later, we were told she was missing part of her heart. We also heard that we had a "long road ahead" and couldn't imagine what that entailed. When Cora was born, we thought we would be devastated when she was taken away for surgical preparation - we were actually at peace and happy to know Cora was in good hands.

Cora came home with a feeding tube and we didn't realize just how big the feeding issue would be for her. We worked with her and she was doing well until she stopped after three months. A month after being home, Cora returned to the Children's Hospital of Philadelphia due to a pericardial effusion. A month later, she was brought to the local hospital for borderline dehydration. Just when we thought we were settling back the following month, Cora prematurely returned to CHOP for her second operation at four months of age.

It was after the Bidirectional Glenn that we saw even more wonderful progress in Cora. She was a happy, content baby after the Norwood, but she became even more cheerful and energetic. One of the many things we admire about her is her ability to smile, sing, and play in any situation. Throughout the hospital stays and various complications, she has been an amazing little trooper.

Upon our last return home, Cora decided she didn't need her feeding tube any more. This was a miracle considering she had given up eating for weeks. Her eating continues to improve, as is her weight. Cora had two factors against her going into her first surgery: her small size and small aorta. Now at six months old she is thriving.

We are grateful to the staff at the Brunswick Hills OB/GYN office, St. Peter's University Hospital, and CHOP for giving us hope and the ability to tackle each issue as it arose. We have been overwhelmed by the selflessness of others and blessed with the invaluable support and prayers from family and friends. Other families with heart children and those involved with Little Hearts have given us immeasurable optimism and valued friendship. Cora's grandmothers helped us settle into parenthood and taught us to enjoy Cora for who really is - a happy, normal baby. We are honored to be Cora's parents, and hope we can make her as happy as she makes us.

Story by Cora's Mom and Dad, Valerie and Mark - New Jersey