Claire's Story

 When Jen told me she was pregnant  I was so excited about another grandchild added to our family. A few months later we learned it's a girl which made it even better cause now I was going to finally be able to buy all those cute little clothes to dress her up in.

 

She finally arrived weighing  8 lbs  3 oz, was 21 in long, and was just the most beautiful little baby .The next day we had a little set back with being able to bring our little darling home because of her kidneys. It was sad but we'd be ok if she was going to be ok.

 

Proud grandma & her Mama spent the 1st week  taking pictures of her in those cute outfits while she was in the hospital bed. I was just in heaven showing off all those pic's too. We finally got the news she was doing great and we could take her home in the morning. Excited and getting ready to get the heck out of there our little Claire Bear started acting funny. She wasn't eating and when she did it would take a hour, just for her to throw most of it up. She became very hard to wake up so we asked the nurse if she was ok.Her comment was she just a baby that sleeps a lot and tells us if we wanted to go home in the morning we needed to get her to drink her bottles.

 

During this time the Pulse Ox monitor was applied but not picking up anything. The nurse changed out the monitor saying it was defected. The next monitor wasn't picking up any readings either. The shift changed and we have a new nurse which in a way was a blessing cause she started noticing something was not right.

 

The nurse called in the head nurse to listen to her heart. She blew it off and told her it sound like a heart murmur just document it and tell the doctor in the morning. A few min's later the nurse looks at us and tells us I don't have a good feeling I'm going to go wake up the doctor. 

 

I remember It was a little after 3 am. Jen gets up to hold her baby and the nurse walked out to make that call. As soon as she is on the phone Claire goes into cardiac arrest while in her mommy's arms. This part makes me really break down and cry thinking of that awful morning. Jen started screaming, the nurse yells for help, a code was called , we were thrown out of Claire's room and the crash team comes running pass us to her room. 

 

My daughter was on the floor begging God to not let her baby die!! The next time we saw her she was on life support and needed surgery to save her life. A part of me wanted to be thankful that we were there and the other part wants to scream A HEART MUMMER IS WORTH CHECKING OUT!!!

 

If only I had know the signs of CHD I could of demanded that day for an echo. She was 12 days old when she had her 1st surgery. We were told she took a harder hit to her heart then what they had thought.

 

A week later she was airlifted to another hospital 4 hrs away. There Jen lived right next to her baby's side for the next 4 months.  Claire will need more surgeries. She  has many development delays but she has been a warrior through all of this.

 

For right now she is doing really well.  I spend my extra time spreading CHD Awareness and sharing with a mommy to be why she needs to ask for a pulse ox. I don't ever want another child, grandma, or any other family member, to feel the pain I did that morning. The Pulse Oximetry test being monitored by a nurse with awareness for the warning signs of heart defects, would have prevented this.  Education and awareness for CHD, is the key for saving lives. Everyone; Doctors, nurses, and family need to assume the responsibility of this knowledge.

 

                                     Claire and her Mommy Jen

David's Story

On September 19, 2010 when I was 33 weeks pregnant I was admitted to the hospital for contractions.  At 4:00am on Monday, September 20, 2010 David was born by emergency csection when my placenta abrupted. 

 

 He was immediately taken to the NICU because he was having problems breathing on his own.  A few hours later 2 doctors walked into my hospital room.  They told us they were pediatric cardiologists and that David had a severe heart defect, Hypoplastic Left Heart Syndrome.  The nurse noticed that his feet were turning very blue and he had weak pulses in his extremities. 

 

It was never picked up on any of my prenatal ultrasound.  We were told we only really had to options- comfort care or staged surgeries.  Heart transplant was not really an option for us because of his prematurity.  We opted to try the staged surgeries.  David was transferred to the PICU at the Cleveland Clinic.

 

They had decided to try something a little different with him because of his prematurity.  Instead of doing the traditional Norwood or the traditional Hybrid, they decided to try keeping him on prostiglandins and putting bands on his pulmonary arteries (PA banding) to restrict some of the blood flow to his lungs.  The thought was to allow him to get a little bigger so they could do the Norwood.   That seemed to be working well for a little while.

 

After a few weeks we got a phone call that David's oxygen saturations were in the 30s and his C02 levels were dangerously high.   His PDA started to close, even on the prostigladins, and the bands were too tight.  He was rushed back for surgery to loosen the bands and stent the PDA.  It took numerous other trips back to the OR to get the bands the correct tightness. 

 

David also had 5 cardiac catheterization.  He had stents in his PDA, through the retrograde arch, and atrial septum. The stenting caused tricuspid regurgitation (leakage of the tricuspid valve), and during his last cath his pulmonary valve tore, causing regurgitation of his pulmonary valve.  David also had many feeding issues and was never able to drink out of a bottle. 

 

Because of the issues with his oxygen saturations and being premature he had developed severe brain damage known as PVL (cysts on his brain).  Over 75% of his brain was effected.  During one of his CT scans they also noticed that he at some point had had a stroke.  EEG leads were put on him and it was discovered he was having over 20 silent seizures per hour in the area where the stroke occured. 

 

On January 13, 2011 we were told there was nothing more they could do for David.  His body wasn't strong enough to handle such a major surgery like the Glenn, his wound still hadn't healed from his surgery over a month prior, he had been having unexplained fevers for weeks, and bloodresults showed he was in heart failure. David was still intubated from his last surgery and we chose not to take him off the ventilator.  I spent the next week in bed with David, cuddling him and telling him how much I loved him. 

 

On January 20, 2011, at 4 months old, David went to be with Jesus.  Mommy, Daddy, and his big brother were the only ones in the room with him when his heart stopped beating on it's own. David never got to come home. Not a day that goes by that we don't think about him.  He is still very much a part of our lives.  His big brother talks about him all the time and blows kisses to his baby brother in heaven.  We share David's story with anyone who will listen. 

 

I want every expectant mother to know the importance of making sure the ultrasound tech gets a good look at their unborn child's heart.  Research shows that prenatal diagnosis leads to better outcomes for babies. David's life can be read at www.caringbridge.org/visit/davidlibby

 

 

 

Yasmin's Story

Hey there. My name is Yasmin and I am 26 yrs old, and I was born with a heart condition callled Tetrology of Fallot. I have had two open heart surgeries and I had my first one at the age of three and my second at the age of twenty.

When I was born, my parents were wondering why I wasn't a pink baby! I was a "blue baby" and I stayed blue for a very long time. My Drs ran all the tests such as X-rays, ECHOs, EKGs, and CT scans; they didn't find anything in the X-rays, but when they did the ECHO and the EKG they discovered that I had VSD (Ventrical Septal Defect also known as pinhole) and ToF (Tetralogy of Fallot).

I was closely monitored while growing up and I was fine until the pinhole in my heart didn't close on its own and the Drs had to surgically close it. My first surgery was at Children's Hospital in Los Angeles in 1988 and the Drs closed my small VSD (ventrical septal defect) and they put a homeopathic conduit it to connect the left and right side. I was told that because I was growing that the child's size wouldn't fit and this is why the Drs put an adult conduit in. On a return visit for a check-up I got the petal stuck on the sink (they had the ones where you stepped on the petal and washed your hands), and so they moved us to a new room. In the second room I was playing on the bed and my Dr had his hand on my head so that I wouldn't bump it. The bed had a storage area under it. I was doing great, and the Drs said " I would have to have a second one at the age of thirteen" but I didn't need it then because I was growing perfectly.

By the time I was twenty I was already showing signs of needing another open heart surgery, and the reason that my Dr and my parents came to that conclusion was because I was pale and my blood pressure rose (it was 300/91, or 200/90). I was 20 years old and on blood pressure meds. In November of 2005 I went in for my second open heart surgery where they replaced my conduit and they also put a metal stent in. They used the stent to widen my arteries that were small and narrow and they also replaced my pulmonary valve. This was performed at UCLA (University California Los Angeles) by my surgeon, Dr. Hilal Laks who did a wonderful job. However, during my second surgery I had a few complications: like my heart was sticking to the sack that holds it in place so it doesnt hit the ribs, and that was bloody. Then a few days before I was supposed to be released my white blood cell count flew through the roof. I then somehow had gotten an infection and my left lung filled with fluid and collapsed. The Drs drained it and I was released November 25, 2005. a.k.a Thanksgiving Day.

I am currently doing great health and spirits.

I have just married my soulmate on July 10, 2010 and living life one step at a time.

 

I found my heart as a blessing, and it has taught me compassion, love, and wisdom.

 

Tiny's Story

Our son (to be adopted in 2012) was born on June 20th in a Northern Calif city. He is the biological sibling of our now youngest 2 kids. He was born in a shed in an attempt to be hidden. After 8 days of life he was discovered by the sheriff's office and CPS and was taken immediately to the hospital....thats when we got the call... The following morning they discovered through a "chance" echo that he was a Hypoplastic Left Heart Syndrome baby... We were then told there was nothing they could do and that our boy would die.  UCDMC told us otherwise!  (what a miracle that he lived this long!!!)
He was transferred immediately via air and had surgery on June 30, 2011.
After 2 months of emotional ups and downs we were discharged home on the home health program.
Our baby thrived and became quite the joy in our home. As most heart parents know during these first few months of life we have to shelter them from as many outside germs as possible, so we spent the bulk of our time at home.  My wife and I rarely (if ever) went out alone for the next 6 months.
We had a number of hospitalizations between Sept and December for illnesses, colds, etc but overall "Tiny" continued to gain weight and thrive.  He had a smile and eyes that melted everyone. He truly was beautiful.

The days leading up to Thanksgiving it became quite clear that we were approaching the need for the Glenn surgery... His SAT's would drop to 50% without any crying or fussing. We stayed home until the day after Thanksgiving and finally had to take him back to the hospital. His sat's would continue to drop during the next week - as low as 40%, again without any crying, etc... In fact he was happy and comfy up until the morning of his surgery.

Friday, Dec 2nd Tiny had his Glenn. The staff let us carry him down to the OR and we quite literally handed him off to the OR staff. Through tears we kissed our baby and then had the agonizing wait ahead...

He did well in surgery as far as his heart was concerned but blew up to nearly twice his size for unknown reasons.

December brough many ups and downs emotionally. Days we thought he would survive. Days we were certain he would die.

Tiny remained on bypass and ECLS (ECMO) for the next 25 days. 
On or around December 23rd we had to work with the hospital to make some agonizing decisions.

On Dec 27th my son was removed from life support at about 2:30 in the afternoon and passed quite quickly.

God has opened some amazing doors for us through this. We have met some amazing people, made some wonderful new friends and really, have grown to love our "heart family,"

I have to name a few people that we love - first, our surgeons and their ENTIRE team at UCD (Gary Raff, Ming Si, Mark Parrish, Celia Buckley and Barb Goebell and the PICU family), our new friends (Katie Beers, Melissa Murphy, Stevie Long, Andrea Himmelberger,). Special "shout outs" to Mended Hearts Shannon Tucker and again the entire team at UCD.
We could quite literally not have done this without our faith in Christ and the support of our friends.

The outcome is far from what we wanted (or want), but knowing that our Tiny Warrior doesn't have to suffer any more gives us comfort.  God gave us 6 months and one week with our boy - but our lives are forever changed.

Id love your support in helping at our blood drive on Feb 19 and also in raising funds for UCDavis PICU (were trying to get Tiny's name memorialized on the walls there and help other fam's)... You can learn more on face book - just search "tinySmiles."

I pray every day for my heart family - those I know and those I read about.  You are all loved. Please, lets use the opportunity we have this month to raise some positive awareness for CHD's and the battles we, and our kids, face every day.

Christopher's Story

I am not sure where to start, but I guess letting you know how I learned about CHD. It was when my youngest son was born and I was told , quote, “your son has a lousy heart.” Those words were followed by, “there is nothing we can do, take him home and enjoy him.” Okay, I am thinking, “it’s 2008, what do you MEAN, you can’t fix his heart!?” People in general perceive CHD’s to be something like a minor hole in the heart, something that can be grown into, or “fixed”. The reality is that these children, SOME of them have the option of surgery, but not without lots of risk. Christopher is one of the ones that surgery isn’t an option for. His condition of dialated left ventricular non compacted cardiomyopathy means that that when a fetus is in utero, their heart is sponge-like ?(non-compacted)?. When they are ready to be born the heart will compact and become more solidified like a muscle. CJ’s heart did not do that - resulting in the cardiomyopa?thy (weakness of the heart). It affects his right and left ventricles where it is very hard for his heart to pump and function correctly. Nothing is missing, out of place, or backwards. It’s the whole heart, all big, stretched out, and stiff.

We took him home at 45 days of age and he was admitted into hospice the next day. The doctors told us that his prognosis was six months or less. We had to learn to accept that each day may be his last. It is a very hard thing looking into your beautiful child’s huge eyes and knowing he is just on loan for a short while. God is the only reason I made it through that period of time, and I never let go of my faith that God would make my baby whole and it was a win win situation for him no matter what. The footprints prayer, well that was me, God literally carried me through. I remember people saying "they don’t know how I could sleep at night". Well, in the beginning it wasn’t easy and the pulse ox was a huge comfort as I could listen to it beep and know his heart was still beating. But somewhere along the way, I grew more confident, and eventually the pulse ox got dusty and I felt peace in knowing that Christopher was going to be okay.

Some people called it denial, some people called it an amazing act of faith - I tend to agree with the latter.

I trusted God and with that trust came the biggest peace that is very hard to describe. We celebrated Christopher’s birthday weekly and monthly, cake and all. Eventually, his expiration date came and went, he still remained a hospice patient, and we were still taking it one day at a time. His first birthday arrived and I cannot express to you the joy I felt that whole MONTH. The day we were promised NEVER to see was here!!! We had a huge celebration, and continued to give all honor and praise to the Lord. Christopher continued to get older and when he was 15 months old his hospice nurse decided it was time to take a look at his heart (we weren’t allowed any more ECHO's) with Christopher being a hospice patient and they “didn’t want to keep getting our hopes up”. The doctor told us that his heart had slightly improved but that he was still hospice status. Two days later we received a call from him that our visit left him feeling like it wasn’t finished and he took annother look at his ECHO. He also had all of his colleagues review it and Christopher’s heart had improved so much that in his good conscience, he could not recertify him for hospice! Okay after trying to put into words how I felt on his birthday, this is even more difficult to describe. Our language does not have a strong enough word. I can tell you that God does reward trust and faith and Christopher is a living breathing example.

In February 2010, it was discovered that Barth Syndrome is the cause of Christopher's cardiomyopathy.

Barth syndrome is a rare, sex-linked genetic disorder of lipid metabolism that affects males. Typically, boys with Barth syndrome present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) at or within the first few months after birth. Other important features of Barth syndrome include bacterial infections because of neutropenia (a reduction in the number of white blood cells called neutrophils), muscle weakness, fatigue, and short stature. Although most children with Barth syndrome manifest all of these characteristics, some have only one or two of these abnormalities and, as a result, often are given incorrect diagnoses. It is very rare, less than 200 known cases worldwide. So much that if people would hold hands from one end of the world, all of the way around, only one of those people would be a boy with Barth syndrome.
There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled.

He is now 3 years and 8 months old, his 4th birthday is rapidly approaching and I am basking in every minute with him. I still know better than to take for granted my time with him as we don’t know when God will call us home. It is a true miracle that my Christopher is alive today. God is still in the miracle business. Also, doctors have to tell you what they have learned in the text books, but that doesn’t mean God or the child in question is reading that same book. I don’t know God’s plan, but I know that the least I can do is to continue to honor and praise Him, while also helping to spread CHD awareness.

No one would ever know that Christopher is not what most people would consider "normal"

This is an image that no parent should ever have. Yet for CHD families,this is our reality.

A beautiful boy who loves life and especially his family.

A loving family who has and will continue to stand by Christopher as he continues on his journey.

Robbie's Story

Robbie was conceived 1 month after I lost a child at 18.5 weeks gestation due to incompetent cervix. I had a cerclage at 12 weeks. at 14 weeks, I was funneled to the stitch. I was on bed rest 5.5 months. I went into labor at 25 weeks, which was stopped with drugs. I had shots to mature his lungs and was made aware of the complications that are associated with a birth at 25 weeks. The Dr's said they expected him soon and wanted me prepared because babies are rarely healthy that early. I had gestational diabetes and took insulin. we approached each week as a new developmental goal and the objective was to keep him in as long as possible. I had at home monitoring with a contraction monitor and faxed results twice a day. After many scares, I had the cerclage removed at 36 weeks, and was INDUCED at 40 weeks. He wouldn't come out! He was taken by C-Sec 13 hours later. After his pedi did his first physical, The head of pediatric cardiology came to talk to me. I was devastated as soon as he introduced himself. He looked really worried too. I'll never forget this moment. He said "your son has a very large hole in his heart. 3/4's the size of his heart wall." I thought he was telling me I was going to lose another child. He said we'd wait and see what happened. but, that he would probably need surgery. I was wrecked. So was my husband. We had thought if we'd survived this pregnancy, we'd be in the clear.

We told our family, not exactly telling the seriousness of the situation. our whole family was heartbroken. Shortly after coming home, Robbie went into heart failure. we brought him to the ER, they transferred him to Yale by ambulance. He was given MANY drugs and I was taught how to administer them. we were there a week. His day started at 5 am with his first dose till his last dose at midnight. I slept him in my bed so I could watch him to make sure he kept breathing. He was good about two weeks on the meds.

One day I noticed he'd slept all day(which wasn't so unusual since he was so week. He'd only eaten 2 oz of formula all day and his breathing was weird and he was pulling at the ribs. I rushed him to the pedi, who looked scared and had me take him to the ER, they pushed us right through to NICU. They gave him oxygen, and a feeding tube, and told me to call my priest. We had a baptism for him in the hospital, which I knew was really his last rites incase something went wrong, Robbie was transferred to Yale Children’s Hospital. They remembered us when we got there. Robbie had his surgery July 17th, 2005 at seven weeks old. They found an additional hole in his heart and sewed that when they patched the other hole. I can tell you I have never seen anything as horrible as what Robbie looked like in that bed after the surgery. I was told he would be paralyzed the first night so he wouldn't hurt himself. He did, for just a second open his eyes and smile at me, like to tell me he'd be okay. He was a miracle. truly.

It was a horrible journey, but the reward is someone I could never express in mere words his meaning to me. This child saved my life and restored my faith. 4 days later he was home like nothing happened! He was a whole new kid! He was weak for a long time, but he didn't even have pain meds when he came home! He's amazing. He has had great follow ups since and now only has to be checked every three years! He is a healthy 6 year old now, He plays football and is very smart. He has some other health issues, but nothing we can’t handle. He's still a little small but within healthy limits. He'll need no additional surgeries. I tell him all the time that the Dr's fixed his heart, and he fixed mine. He is my best friend.

Robbie's superhero cape!

An EKG should never be normal for anyone,but for Robbie it is.

                                               

                       You would never know Robbie had a heart defect

CHD Awareness

Since February is finally upon us I will be sharing heart stories with my readers for as long as I have enough stories.Technically CHD Awareness week is the 7th-14th,but I am extending it to include the entire month of February. February is more than just Valentines Day.It's a month that many people in the heart community spend making people more aware of the fact that CHD's occur in 1 in every 100 children. Yet the funding for CHD's is significantly less than the funding for childhood cancers or autism. Now I am not saying that those causes are not worthy of funding, I am merely saying that CHD's need more awareness and they need more funding so that people can take them seriously.

4,000 heart babies will not live to see their first birthday. I know several of those babies myself. Including baby Rowan who was born premature with TOF and PA. He lasted only a few days. While I know his family will not be up to spreading awareness this year,maybe next year they will be ready to join the ranks of all heart parents who continue to fight for awareness for their warriors or angels.