Joshua's Story

I was about 16 weeks along when I went for an ultrasound. I've always been high-risk because of being diabetic and losing 5 babies. I saw the flicker of the baby's heartbeat and thought everything was ok. Then the doctor came in and said "As you know, we're looking at a large hole in the heart." No, I didn't know.

The next few weeks were a whirlwind of genetic testing and the OB kept asking if I wanted to abort. For me, no matter what the outcome would be, I couldn't do that. April 28, 2009, Joshua was born via c-section. The NICU at the hospital gave him to me to see for only 2 minutes before they transferred him via ambulance to the Children's Hospital of Michigan. I busted my butt to get discharged so I could be with my baby. I didn't get my staples out for a month because I wouldn't leave him to go back to the other hospital.

 First time I saw him, I was terrified. I wasn't prepared for him to look like that, with all those wires and tubes. :( They had done testing to see what all was wrong and he was diagnosed with Tetrology of Fallot, Pulmonary Atresia, Complete Atrioventricular Canal Defect Type A, as well as a T3 hemivertebra and an inferior and swivelled right kidney. The BT shunt was done at 8 days old. Unfortunately, my sister, brother and cousin were also due around that time so I was alone.

He was in the NICU for 3 weeks and before he could be discharged, I had to learn CPR as well as how to place his NG feeding tube. The NG tube was the scariest for me and deservedly so. He wound up pulling it out at least 5 times a day and was later diagnosed with choeneal atresia and CHARGE Syndrome as well. He had failed his newborn hearing screening four times and it was discovered that he had bilateral sensorineural hearing loss. At 4 months of age, he received a G-tube and at 10 months, the Mick-y button. He was in OT and PT to help him to learn and eat and develop his gross motor skills. He had a heart cath in Oct. '09 and it was discovered that he would need the repair soon and his O2 sats were at 49.

So on Nov. 10th, at 6 months of age, he had his tet repair. He had to be re-intubated four times as he kept crashing. His breathing became retracted and it was discovered that his right lung had collapsed and blood was pooling around his heart. That was horrible for me to see my baby struggling like that. They had to do a conduit as opposed to the patch so he will need surgery to replace the conduit every 2-5 years. His mitral and tricuspid valves both leaked after the repair but the tricuspid closed up on its own.

He had surgery to repair the mitral leak, replace the conduit and do a pulmonary angioplasty on Aug.23rd, 2011. He suffered a min-stroke post-op and it took weeks for him to fully recover but thankfully, he did recover.

He has also had surgery on his ears and his testicles. For now, he is a happy, smiling,amazing warrior and I couldn't be prouder to be his mom. <3

Nicole's Story

Nicole Fitzgerald: diagnosed at age 22 with atrial septal defect, tricuspid and mitral regurgitation, pulmonary hypertension.

 

I got pregnant with my first daughter and alot of things started happening.I had just turned 18 when a few days in a row, parts of my face started going numb. I was young and dumb and thought life was a joke, so I didnt even worry about it, I just thought it felt weird and laughed it off.

 

About 2 weeks later, I woke up in the middle of the night with the WORST headache of my life. My head burned, and my ears and everything. I literally just sat on the bed curled up rocking back and forward until i finally just passed out from the pain. After that, every day for 3 years straight, I had a headache. They ranged in intensity from slight to very bad. It was horrible at first but I eventually got used to the headaches. I also got purple areas on my lower legs and hands. I got preeclampsia with her and was put on bedrest. I told my OB over and over that I was feeling horrible. I always had times when I felt as if I were going to pass out. I got short of breath doing everything. I couldnt even be a kid anymore and run or anything. My heart rate was so fast it made me feel lightheaded.

 

I started getting arrythmias daily. After I had Kaylie, I just went about my life. Feeling horrible every day, I finally went to the clinic and got some medicine for my fast heart rate. I was put on metoprolol. It worked decent at first. They did an ultrasound of my heart. It was shown as being fine except i was on the upper limits of normal heart size.

 

At the age of 21 I got pregnant again. I was scared honestly because I knew something was wrong with my heart. I had spent years researching what the heck could possibly be wrong with me. I was tested for Lyme Disease, MS, and a stroke. I also had a MRI of my brain that showed white matter, but that was never further investigated. I went about my pregnancy and I was doing quite well.

 

The hormones from the pregnancy made my headaches go away which was nice. I was actually down to 1 beta blocker pill a day which was great cuz I usually took around 3. Everything went great until the 5th month when I got SO out of breath. I told my OB and she had me sent to a cardiologist to check my heart. He noticed that my fingernails and toenails were blue and he had me walk around the room with a pulse ox don and my oxygen dropped to 80. He did an ultrasound with saline bubbles and that day when I watched them inject the bubbles into me, I saw it and I KNEW that seeing the bubbles go from one side of the heart to the other, wasnt good.

 

I went back to the cardio and he told me I had an ASD. He put me on bedrest so that my pregnancy wouldnt be harmed from the lack of oxygen. I was told I needed it repaired since it is causing cyanosis and low oxygen levels. I think of Brennan as my miracle baby because if it werent for him, I would have probably never found out what was wrong with me because I had been to many doctors before and they had all thought that i was insane and nothing was wrong with me. Now i know all of the headaches and things were from low oxygen.

 

Now i have other secondary things wrong with me from being undiagnosed. Like a bad gallbladder, enlarged spleen, kidney problems, interstital cystitis. I've had SO many doctors tell me it was all in my head. They would try to prescribe me SO many pills that I always refused. They thought I was nuts for refusing the medicine, but sorry I'm not going to get addicted to some pills just because a doctor carelessly writes prescriptions!!! I was even prescribed Zoloft during my first pregnancy, which now I am VERY thankful that I never took it, because I see all the commercials that say Zoloft causes severe heart defects if taken during pregnancy!!

 

 

Echo update + Drew's Story

Well the Echo results came back normal. So I am still no where closer to finding an answer for my fatigue & low energy.

MAJOR DISAPPOINTMENT!

I am going to do some research and figure out where I should go from here. I don't want to be tested for anything that I don't fit the criteria for. So I am not going to run back to my PCP just yet. Maybe it's as simple as a diet change?

On to other things. For the heart story today I choose to feature a boy who I have known since he was about 3.Today he turned 8 years old! I am so proud of the accomplishments he has made in his life and I feel confident in saying that God has an awesome plan for his life.

HAPPY BIRTHDAY DREW!

Drew was born on February 9, 2004 and surprised his family with the news that along with a full head of hair, he also had a broken heart. Drew was diagnosed with an interrupted aortic arch and a large hole between the pumping chambers of his heart about 24 hours after he entered the world. His heart was unable to pump oxygenated blood to his body and he needed surgery to live.

There is no cure for Drew's disease, but a series of three surgeries is commonly performed. When Drew was one week old surgeons at UCSF performed the first stage, a Norwood procedure. After ten long weeks in the neonatal intensive care unit he was finally able to go home. He had a feeding tube and 9 different medications. In June 2004, when he was four months old surgeons performed his second heart surgery, the Glenn. He was in the hospital for three weeks. When he came home he had a lot of help from many different people, including a home health nurse, a physical therapist, occupational therapist, infant specialist, speech therapist and music therapist, not to mention doctors in cardiology, endocrinology and immunology.

When Drew was 4-years old he underwent his third open heart surgery in May of 2008 at Lucille Packard Children’s Hospital. Surgeons were able to do a one and a half ventricle repair which restores normal oxygenation. Unfortunately he developed a serious sternal wound infection which required him to stay in the hospital for six weeks after surgery. Once he recovered from the infection though, there was no stopping him! He is no longer on any medication and he has more energy than he ever has. He enjoys playing soccer, baseball and basketball with his friends and is doing great in school.

Drew has endured much in his first four years of life. He also has a compromised immune system (he was also diagnosed with DiGeorge syndrome), which means that he has a hard time fighting infections. He has been hospitalized with pneumonia 4 times. Despite all he’s been through he is a very loving and trusting little boy. He enjoys life and reminds me to be thankful for all that I have. The last four years have thankfully, been mostly uneventful. Drew is now in second grade and doing all the typical 8-year old boy activities. We have been blessed to be hospital free since his last open-heart surgery!

Going through a traumatic event like this changes you.  It has the potential to rip a family apart, to drive everyone past their breaking point, or to bring you closer together and find strength in God and in yourself.  Luckily we have had the latter experience.  My husband and I have learned so much about ourselves, each other, and our relationship.  It has strengthened us and we know that we will always have each other to lean on.  God has become a much bigger and important part of our lives now.  It is through the grace of God that we can find the strength to get through each day.

The birth of my son has without a doubt been my most inspirational experience.  Although I never would have asked for a child who needed heart surgery, or to have to go through this horrible experience, a lot of good has come out of it and I would not trade my special little boy for anything.  I would go through the ups and downs, the horrible days and little miracles a thousand times just to spend one day with him.  He is truly a blessing in my life and in the lives of everyone who meets him.  He is my inspiration.

 

 

Andrea Himmelberger

 

You can read our family updates at

www.himmelberger.blogspot.com

Jarod's Story

When we first found out we were going to have a second child, we were thrilled. Our oldest son was 3 years old and we just knew the timing was right. It wasn't long though before our lives would be changed forever. 

At a routine ultrasound, my OB was spending an awful lot of time on a particular area and then went out to get another doctor to get his opinion...their silence spoke volumes. I of course was a nervous wreck and my OB tried to assure me that it was just precaution and I was referred to UVA for a fetal echo. It was on that spring day in 1998 that has lead us down the path we have been living for the past 12 years. The pediatric cardiologist confirmed the hunch my OB had which was yes, our unborn son had hypoplastic left heart syndrome (HLHS).

At this time we met with a surgeon, met with a second OB who offered to terminate the pregnancy, even though we were at 22 weeks, which was not an option and we talked more with the pediatric cardiologist. We were given the options of 1) Transplant, 2) The 3 stage surgical repair or 3) comfort care. We took in as much information on the defect as we could and went home to research more on the internet. I don't think I stopped crying for a week but vividly remember my 3 year old son telling me "don't worry mommy, the doctor's will fix his heart".

As the months went by and after much research and a second opinion at MCV, we decided that MCV would be the best place for Jarod to have his surgery. We had close, weekly follow up visits with my local OB until Memorial Day weekend of 1998 when we made the drive to Richmond to be admitted for induction. It was a long labor and finally, at 3:30 in the morning on 6/2/98, Jarod arrived into the world very quiet and was whisked away just as fast as he came into the world...it was barely a glimpse that we got of him before he was taken to the NICU, they didn't even take time to get an arm band on him.

We had a lot of doctors and nurses in and out of the room with updates, concerns and even thinking that surgery couldn't be performed because he weighed only 5 pounds, 4 ounces. After the surgeon evaluated Jarod, he felt he could proceed and surgery was scheduled for 2 days later. Jarod sailed through the surgery and was home in less than 2 weeks but did have to come home with a feeding tube which lasted about 3 months.

We settled into our routine, and were now used to the multiple doctor appointments and feeding tube. It was not long before we learned that the surgeon was moving to Texas and we knew the second stage of the procedure was done around 6 months old. Near that time, Jarod started having more symptoms and was working really hard to breathe. Not sure what to do, our cardiology team at MCV had trained with Dr. Norwood when he was at CHOP so they called him for a consult and on 12/27/98 we were on our way to A.I DuPont Hospital for Children for Dr. Norwood to perform the hemi-Fontan. Jarod sailed through that surgery and was home in 5 days! Unfortunately, soon after getting home, Jarod came down with a respiratory infection which landed him in our local hospital for a week, testing positive for RSV, which lead to his asthma.

Once again, we settle back into a routine but in this time we notice that Jarod isn't hitting those milestones that he should be so our pediatrician ordered a brain MRI which showed that he had cerebral palsy...this was more devastating to me than the heart defect because at least they were working to fix the heart but the CP was something that would not get better. Once again we were faced with another obstacle and more specialist appointments and just didn't know what the future was going to hold for Jarod. There were some doctors that said he would never walk or talk...sometimes the doctors just need to step back and realize that they are talking to a parent who will go to the end of the earth and back for their child. We ended up going to Kluge Rehab Center for Jarod to be fitted for a wheelchair and as I watched him, it broke my heart and I just couldn't commit to a wheelchair. I felt that if I put him in the wheelchair, that would be where he stayed. It wasn't long before he pushed his walker aside and started walking. Though his speech still needs a lot of work, he is talking and goes to regular school.

Ahhh, things are starting to seem really normal with the doctor appointments becoming fewer and fewer and all continues to go well. We had a year without any procedures but at a routine follow up and meeting with the new surgeon at MCV, he told me that "I think I can fix this if we wait a year". My medical and mom radar was going wild and I insisted the results be sent back to Dr. Norwood so he could complete the repair which we did in 6/00. Once again, Jarod sailed through the surgery but he ended up developing a blood infection that landed us almost 6 weeks in the hospital for IV antibiotics

Now, that the repair has been completed, we sit back and look in amazement at how Jarod continues to inspire so many people. He has this severe heart defect that required 3 major surgeries before 2 years old, asthma, cerebral palsy, Celiac disease, thyroid problems and now may have borderline diabetes but he always wakes up every morning with a big smile and a go get em attitude! I only wish I had half his courage and bravery.

Thanks for taking the time to learn about Jarod's Heart. Please feel free to e-mail me with any questions you may have at sjdcma@comcast.net

Heart Hugs,

Stephanie & John

Bodie's Story

On October 1, 2009, our world changed forever - the day we heard "your unborn baby has a congenital heart defect." Although we knew it was serious, it would take weeks and several more ultrasounds and fetal echoes before we would have a final diagnosis of Hypoplastic Left Heart Syndrome. Our sweet baby was to be born with half a heart.

We spent the next 4 months crying, pleading with God and praying for a miracle. We thought He would answer by healing our baby's heart before birth. But as God often does, he answered our prayer in another, much better, way. He gave us a little boy who would have more fight in him than we could ever imagine. A baby boy that would have not only half a heart, but odd genetic arrhythmias and a ridiculously low resting heart rate to go along with it, but who would fight on and astonish everyone. A baby who would be a daily testimony to the amazing power of our Lord.

Our sweet boy, Bodie Isaac Bennett, was born on February 16, 2010 at a hefty 7lb13oz and 20.5in. He had his first open heart surgery, the Norwood, on February 22, 2010

He had a fairly rough recovery before finally coming home at 6 weeks old. He had a paralyzed vocal cord but managed to take all of his feeds (thickened) by mouth. He also had an unexplained dependence on oxygen and was sent home on 1L of oxygen. Our life settled into a new "normal" between round the clock meds and oxygen.

3 weeks later, he became slightly lethargic during his feeds, so I took him to the ER just to get him checked out. Within an hour of being there, his oxygen sats had dropped so low they needed to “bag” him and send him directly to the CTICU. The next day, they sent him for a cardiac catheterization. He coded on the table, and again once he got back to his room. We almost lost him that night, until an angel of a doctor decided to try pacing Bodie externally. Within an hour, he turned around. A week later, he had his second open-heart surgery, to install a permanent pacemaker and change out his shunt. He came out of surgery in great shape and flew through recovery, coming home just 2 weeks later!

4 days after that, he was readmitted to the hospital with blood in his stool. During the week it took them to determine than it was c-diff (a nasty hospital-borne infection), he contracted parainfluenza from a roommate. We almost lost him a second time as he was rushed to the CTICU and intubated. Once they got him on the right antibiotics, he was able to be extubated and recovered nicely. He was moved to the step down floor and spent 30 hours there before being rushed back to the CTICU again in critical condition. He was again intubated and given medical support as they determined that he had an MRSA infection in his blood. He then spent 6 weeks in the hospital on IV antibiotics (5 of those weeks were spent in the CTICU as he needed a heart medicine, milrinone, due to the beating his heart took from all of the infections). 

 

The day he finished his antibiotics, he was discharged! He then spent almost 2 months at home, growing and thriving. He did amazingly well while at home and we cherished our time together, as a family of 4, finally at home!

On September 13, 2010, at 7 months old, Bodie underwent his third open heart surgery, the Bi-Directional Glenn. By all accounts the surgery was a success. He was extubated the next day and home 4 days later! 

Bodie has been home since then (other than a 1 night stay for a virus induced tachycardia (high heart rate) in August 2011) and is thriving. He is now a rambunctious almost 2 year-old. He LOVES to climb (on ANYTHING) and is in a perpetual state of motion – we call him the “tornado with legs.” Honestly, other than getting more winded than your average kid (which he doesn’t let stop him AT ALL) and giving him meds 3 times a day (which is no harder than giving a kid Motrin or Tylenol – it’s not nearly as bad as it sounds), he’s just like any other little boy. If you don’t see his scars, you’d never know what he has been through. He is a ball of fire and keeps us laughing all day long. We are loving watching him grow up with his big sister.

We know Bodie has at least one more surgery in his future, the Fontan (probably Spring/Summer 2013, although it’s really up to his body and when he needs it), the "final" surgery in the 3-stage palliative surgeries used to treat HLHS. And he will need pacemaker maintenance for life. But our lives are so normal right now. When we embarked on this journey, I could never have hoped our lives would be this good. Our sweet fighter has had a rough road to be sure, but God has answered the prayers of so many faithful people who have been praying without ceasing for Bodie and our entire family.

We could not be more blessed to have Bodie in our life. He has taught us so much about strength and determination and willingness to live. And about taking life one day at a time and enjoying the small moments. He loves life. He has no idea life dealt him a bad hand. He was born with half a heart, yes. But twice the spirit. Twice the determination. Twice the love. We love our little man and would walk this journey again in a heartbeat!

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