Today is the last day of CHD Awareness Week but it is not the end of learning about CHD and doing what you can to spread awareness.
Research is the number one way that CHD Awareness will continue to grow. In fact over the last decade death rates for CHD have declined by almost 30% due to advances made through research. Even though we have made advancements in the last ten years research continues to be grossly under funded.
One of my favorite organizations that is solely commited to CHD research funding is the Children's Heart Foundation. It is a great organization to donate to if you are interested in helping fund CHD research.
Another thing you can do is help to pass a bill that requires newborn screening using pulse oximetry. Pulse ox is a simple, inexpensive, non-invasive test that determines the amount of oxygen in a baby's blood and the baby's pulse rate. Low levels of oxygen can be a sign of a congenital heart defect. It is such an easy test that just requires a sensor to be placed on the child's skin (usually a finger or a toe) and it quickly measures the oxygen levels. We even have a pulse ox machine at our house for Stella (we rarely use it now but when she was younger she had to monitored most of the day). Although a pulse ox screening will not detect all CHDs, it is the easiest way to find out if more testing should be done. Currently only 9 states have legislation for Newborn Screening. Arizona (where we live) is NOT one of theses states and there is no reason that all 50 states should not require this test-the cost for a screening is so minimal. If you would like to request that your state require this simple screening you can contact your local March of Dimes.
There are also many numerous resources that families who are affected by CHD should be aware of.
Mended Little Hearts has groups nationwide that help to support CHD families. When we were in the CVICU they gave each family "hospital survival" bags and they have events for the families to get to know each other.
The Whole Hearts Foundation was founded by Matt Hammitt, the lead singer of Sanctus Real, to provide financial, emotional, and spiritual support to families of children with congenital heart defects. Matt Hammitt's son, Bowen, was born with Hypoplastic Left Heart Syndrome (HLHS) and he actually came and spoke at our church, The Grove, when I was pregnant. I remember listening to his story in tears and thanking God for giving us a healthy pregnancy and a healthy baby. I didn't think that I could handle having a child with CHD but God knew exactly what I could handle!
This song, All of Me, was written by Matt Hammitt about his son.
The Nick and Kelly Children's Heart Fund is a local Phoenix organization that helps to cover medical expenses of CHD families. We chose this organization to donate to for Stella's 1st birthday because all of the donations go directly to help Arizona families of children with CHD (many of the families that we actually met in the hospital.)
It is so important for any heart parents to connect with other families and there are so many resources that make this available. I am so thankful for the connections we have made with other families in similar situations. What a blessing it will be for Stella to grow up knowing friends who have been through some of the same heartaches and who have similar scars.
Here is Stella and Alexandra, another heart warrior we met through a heart mom group, celebrating Stella's first birthday.
I am really honored that YOU have chosen to take a week long journey with me to discover more about CHD but I urge you to learn more and look into what YOU can do to help us fight this incurable battle. As you see all of the pink, red, and hearts today in honor of Valentine's day I urge you to think about this post and what you are willing to do to continue spreading awareness.
It is a fact that Stella was born with a congenital heart defect and having CHD is a huge part of our lives but Stella is not defined by her CHD.
If we were going to label Stella with her medical conditions the list would be long - TAPVR, pulmonary vein stenosis, Cerebral Palsy, oral aversion/food intolerance, Gtube fed, right-sided weakness, flexible scoliosis, developmentally delayed. In fact, almost half of all children and adults with complex congenital heart disease have neurological and developmental disabilities on top of their CHD. However, I think it is extremely important that Stella is raised understanding that these "disabilities" are a part of her but they are NOT a part of WHO she is. Seeing so many doctors and other medical professionals it makes it hard for people with developmental disabilities to distinguish what they are being labeled with and what defines their character.
The things that define Stella include that she is a child of God, a strong,stubborn miracle who was fearfully and wonderfully made.
For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made: your works are wonderful, I know that full well. (Psalm 139: 13-14)
When God created Stella he made her exactly the way that He planned and this makes her perfect even through her imperfections. As Stella grows up I hope and pray that she uses this verse as the core of how she chooses to define herself. If Stella were defined by her medical imperfections she would be limited in her abilities and activities. I have already seen Stella overcome so many obstacles and "impossibilities" that I know she will not be held back by limitations. Stella is a strong, stubborn miracle who can accomplish anything she sets her mind to!
She's already come so far from the little baby in the NICU
When Stella was born with her CHD we had no idea that she would be born with a heart defect, we pretty much had no idea about heart defects and how common they are. Looking back on everything I am thankful that we didn't find out about her condition while I was pregnant because many special needs parents are encouraged to abort the baby when something abnormal is found and because we would have still made OUR choice to keep our daughter but I would have spent my entire pregnancy worried about the open-heart surgery that was coming. However, if we had known I would hope that someone would be able to share their experience with me to help me be prepared. On our journey I have discovered that being a heart mom is NOT for the faint of heart and although becoming a parent will completely change your life and your priorities, becoming a Special Needs parent completely turns your world upside-down.
I can proudly say that I am a Heart Mom and the Mom of a Special Needs child - but ultimately I am the Mom of a very special girl who has taught me more about life in her first year than most people learn in a lifetime. Every day with her is truly a gift from God. But if I had the chance to go back and tell myself some things to help me prepare for what we were about to encounter these are the top ten things that I would share:
1. You will lose friends - Becoming a parent can sometimes alienate you from your friends who don't have kids yet but becoming a Special Needs Parent will also alienate you from even more people. Being a parent is a full-time job but adding in health complications makes it like two full-time jobs with overtime. There are many days that are just overwhelming and exhausting that it is hard to find extra time for friends. There are also some friends who won't know what to say about your situation or don't know how they can be there for you. Looking at my phone contacts - over half of them are now doctors or other health providers. Five of the top 10 most frequent contacts that show up are also doctors - a big adjustment from what my phone usage looked like before.
2. You will gain friends - 1 out of 100 children are born with a heart defect, it is the most common birth defect and there are many families that are going through a similar situation. Heart Moms have a bond that is inexplicable because we have all experienced that moment when we thought we were going to lose our child and we understand that friendships are very important to each of us but they can not be our top priority.
Spending over 3 months in the hospital and countless days at doctors appointments we have also had the privilege to befriend many of the people who have helped in providing Stella with her medical needs. From nurses, to respiratory therapists, to nurse practitioners, to doctors...we have had many new faces who entered our lives during a tragic situation and have stuck around because of the relationship and trust that we built up with each other.
3. You will learn how to function with little to no sleep. This sounds like a common thing for new parents but I'm not talking about the waking up every 2-3 hours to feed an infant who will fall back asleep and take naps during the day. With Stella we did not sleep for an actual full night until after her 1st birthday. As a heart mom you spend many nights sleeping in a hospital room on a chair (or if you're lucky a small, hard "couch") with machines beeping throughout the night, nurses checking in every hour and commotion happening right outside of your room all throughout the night. If you're not sleeping in the hospital room (when Stella was at PCH for her 2nd open heart surgery we had the chance to stay at the Ronald McDonald House on campus for part of her stay) then you are getting woken up throughout the night by phone calls from doctors. While your child is in the hospital it's not only the harsh conditions that make it impossible to sleep but the few calm moments when you actually could sleep are interrupted by the worried thoughts of being the mom of a child in the hospital. When we were home we did have the comforts of our own bed but we also had machines at home that beeped throughout the night. At one point we had the feeding machine that had to be attended to every 4 hours (with wonderful "false alarms" between), a pulse oximeter with many "false alarms" throughout the night and medications that had to be administered every 2 hours.
4. As a heart mom you have to live with the fact that you could lose your child. I know that this statement could be true for any parent because accidents happen and an unforeseen tragedy could occur that could possibly result in the death of your child. When your child has CHD it is not an unforeseen tragedy...it is a very high probability involving open-heart surgeries and a life-long health condition that could take a turn for the worse any day. I remember a specific moment when David and I were driving home from Phoenix Children's Hospital to pick up a few things from our house because we hadn't been home in over a month and we needed more clothes, etc. Stella was still in the hospital in the CVICU and she was in pretty critical condition. On the way home I started to think about the "what ifs" and it was an awful daydream/nightmare. I had to wonder what it would be like if we had to drive home from the hospital without Stella and how it would even be possible for us to drive home knowing that we would never be able to bring Stella home. What would we do with her beautiful room that she had not even slept in yet...how could I ever bring myself to even walk into my house with baby girl stuff, Stella's stuff, all over the place. It was a horrible, unimaginable thought but it was an actual possibility. Thank God that we were able to bring Stella home where she belongs a little over one month later.
5. As the parent of a heart child you also end up living somewhat in fear. You can't keep your child in a bubble but you almost want to. Stella's immune system has been compromised because of her health condition and her time in the hospital and if she were to get even some common illnesses they could be really detrimental to her health and her heart function. You have to learn all of your child's "normals" (which are not even remotely the same from one child to the next) when it comes to her breathing, her heart-rate, her oxygen saturation, her coloring, her overall demeanor and personality, and her normal activity. You really have to learn how to read every move your child makes and recognize any changes because they could be a sign of a heart problem.
6. As a heart mom you have to learn how to live day by day and sometimes even hour by hour. "You time" is a very rare commodity and your schedule has to be extremely flexible because it could change at any moment. When you go to bed at night you don't know exactly what tomorrow will bring. Your social calendar will revolve around doctors appointments, vaccinations, physical therapy, speech therapy, occupational therapy and play therapy.
7. You will quickly learn that you are the ultimate advocate for your child and you will know her medical history like the back of your hand. You will see multiple doctors in the same field to find the one that fits best with your child and you won't settle for anything mediocre. We are very fortunate to have a group of great doctors for Stella and I firmly believe that each one of them has her best interest in mind. However; we see over 7 different specialists and I am the one who is ultimately responsible for knowing the details about Stella in each area. The doctors work in one specific area and they are not able to all meet together and collaborate about Stella's total care (that's where I come in!)
8. Being a heart mom changes your perspective on having kids. Stella is our firstborn and we do plan on having more kids in the future but there was a time right after Stella was born that I can honestly say we were scared to even think about having more kids. We have finally gotten into more of a "routine" and things have definitely calmed down so we can honestly say that we do want more kids. The reality of having a child (or parent) with CHD is that there is a 3% higher chance that your future kids will have CHD. So instead of a 1 in 100 chance that our next kid would be born with a CHD it is a 3 in 100 chance...it's still pretty slim but it's greater than it should be. I am very thankful that Stella was our firstborn because I couldn't imagine going through her surgeries with other children at home...how would we split our time, how would we give Stella the attention that she needed and make sure that our other kids were not being neglected?
9. As a heart mom you will have to hand your child over to strangers and trust that they will take care of her. I can remember walking Stella in her hospital bed to her first open heart surgery...we went to the surgical floor but we could not enter the door into the unit. We had to say goodbye to our baby and watch as 4 strangers wheeled her away and prepped her for one of the most invasive surgeries you can undergo. It was extremely difficult to hand her over but having the procedure was her only chance at life.
There were many times when we had to walk away from Stella as a medical professional took over to perform a procedure. It never gets easier! I think this is one of the reasons that David and I both had a hard time three weeks ago when we finally decided we should let 22 month old Stella go to the nursery at church. Aside from medical professionals and family members, Stella had never been in the care of anybody besides us. Now we were trusting total strangers to take care of our baby in a situation that wasn't even medically necessary. Stella did great and loved playing with other kids but it was one of the hardest things the first time we walked away from her to go to our church service.
10. The last thing I have to say about being a heart mom is that with everything else going on you have to trust God! It is so easy to get caught up in the schedule, the lack of sleep, the fear, or even the anger and the only way that makes the journey bearable is to put your trust in God. You have to trust that He has a great plan for you and for your child, and probably the hardest part, you have to trust that His plan is actually the best plan. I am so grateful that God has trusted me to take care of His child (because ultimately Stella is His not mine) and I am going to do the best I can as long as He will let me.
I know this was a crazy long post but I will leave you with this video because it melts my heart every time that Stella says "mama" and although being a "heart mom" is hard it is 100% worth it!
CHD comes at a high price...it will take your time, your money, and at any moment it can even take your life.
Today I would like to take the time to share some of the facts about the money given to CHD research and the monetary cost of maintaining CHD.
Congenital Heart Defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease. Only one penny of every dollar donated to the American Heart Association goes toward Congenital Heart Defect research. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward CHD research. With the knowledge that CHD is the number 1 birth defect the minimal funding is hard to believe; yet it is the reality. One of the reasons that I have chosen to write a daily post about CHD during the CHD Awareness Week this year is that I firmly believe that if more people knew about CHD and how common it is that there would be more money provided for research.
When it comes to the cost of surgery...the Center for Disease Control and Prevention estimates that the cost for inpatient surgery to repair congenital heart defects is over $2 billion a year (in the US alone).
We are very fortunate to have excellent insurance that helped to cover Stella's two open heart surgeries and over 3 months of hospital stay. However; if we did not have insurance we would have been billed for well over $1 million for just one child!
I personally think that this is a million dollar smile and Stella's life is priceless to me but I am very thankful that we had insurance to help cover her medical bills.
On the last day of CHD Awareness Week I will be going into depth about how YOU can help. I will include a lot of great information about how you can help spread awareness, how to detect CHD before it's too late, helpful organizations and resources for families dealing with CHD, and how to donate for research.
It was very easy to write yesterday's post on the things that I HATE about CHD, surprisingly easy. It's difficult for me today to use the word "love" and "CHD" in the same sentence because I can't say that I even remotely like CHD. I wouldn't wish for anyone to discover that their child has a heart defect and have to watch as their baby goes through surgeries, complications, and heart-related struggles.
However; I love the blessings that have come into our life as a result (or maybe in spite of) CHD.
The CHD fact for today is that there are an estimated
2,000,000 CHD Survivors
in the United States! And I am proud to say that I am the mother to one of those survivors!!
I can honestly say that I wish that Stella did not have to go through any of the terrible things she has endured but I love the strong person that she is already becoming because of it.
I love Stella just the way she is and there is NOTHING that I would change about her and NOTHING that I regret about her history. I love how Stella has a smile on her face every day, even the days she spent in the hospital.
I love her stubborn personality because I know that her stubbornness is what helped her to fight for her life when everything was fighting against her.
I love her scream because I remember when we left the hospital and the doctors weren't even sure if she would have a voice
I love her glasses because there was a time when we were unsure if she would even be able to see
I love her scars because they are a daily reminder to thank God for answering our prayers.
I love her sweet voice and her contagious laugh
All of these things make what CHD put us through totally worth it, because without CHD we would not have the chance to be parents to Stella.
I could go on and on about the million things that I love about Stella but this post is supposed to be about the things I love about CHD...
I have to say that the only thing (besides the life of my child) that I can thank CHD for is relationships.
I love how such a tragedy brought so many wonderful people into our lives...from strengthening relationships with family, gaining support from friends, building relationships with other families in the CVICU and creating relationships with the many doctors and nurses that helped to save Stella's life. With the amount of community support that we had, there was not a moment that we did not feel loved and blessed; even on some of our hardest days.
I love that CHD brought us closer in our marriage and closer in our relationship to God...it put us in a rock-bottom place where all we could do was lean on each other and trust in God.
For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)
We had to trust that God had a plan for Stella and a future for us. Many days this was hard to do because we did not know what God's plan was or if His plan aligned with our plan. This experience really taught me how to surrender control and trust God's plan and I have to thank CHD for that.
I don't like to use the word "hate" but I can honestly say that in the words of the Grinch, the way I feel about CHD is "hate, hate, hate. Double Hate! LOATHE ENTIRELY"
Having a child with CHD is life-altering, life-threatening, and emotionally draining.
There are many reasons why I hate CHD but the thing I hate the most is the loss of innocent life. Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
I also hate the fact that more than 50% of all children born with CHD will require at least one invasive surgery in their lifetime.
I HATE that Stella had to undergo two open heart surgeries and countless other surgeries.
I HATE that Stella had to spend over 3 months of her infant life in a hospital bed and I HATE that for over a full month of that time we were only able to hold her hand.
I HATE that so many parents have to cope with the loss of their child because of CHD and I HATE that CHD came so close to taking Stella away from us.
I HATE that Stella had to be on ECMO and have a machine function as her heart and lungs and I HATE that we were given the choice as parents to either let our child die or put her on ECMO in a last-ditch effort to hopefully save her (with a 1-2% chance of succeeding)
I HATE that CHD caused Stella to go into right-heart failure and lose oxygen to her brain resulting in Cerebral Palsy.
I HATE that CHD is preventing Stella from living a "normal" life and I HATE that CHD has completely taken over our lives.
CHD is a lifelong disease that has a life-changing effect on not only the patient but everyone around them. I usually try to be very optimistic about every aspect of our journey and as much as I HATE CHD, it has also brought the biggest blessing into our lives. Tomorrow I'll be writing about the things I actually "love" about CHD (it's not that I love CHD but I am actually thankful for the blessings it has provided).
About 40,000 babies are born with a Congenital Heart Defect each YEAR in the UNITED STATES ALONE, making CHD the number one birth defect.
What is CHD: A Congenital (meaning present at birth) Heart Defect means that a child is born with an abnormally structured heart - these hearts can be incomplete, missing parts, put together the wrong way, or have holes, narrow vessels or leaky valves.
According to the Children's Heart Foundation there are more than 40 different types of congenital heart defects and little is known about the cause of most of them. There is no known prevention or cure for any CHD.
Some CHDs can be found while you are pregnant through an ultrasound but many of them are not discovered until after the baby is born.
There are a few signs/symptoms that parents might notice in their infant that could be related to CHD. The Congenital Heart Information Network lists the following symptoms for infants
-tires easily during feeding
-sweating around the head, especially during feeding
-fast breathing when at rest or sleeping
-pale or bluish skin color
-poor weight gain
-sleeps a lot - not playful or curious for any length of time
-puffy face, hands and/or feet
-often irritable, difficult to console
Stella's heart defect was not something that we knew about before she was born, in fact I knew very little about CHD. Stella's condition was discovered while we were still in the hospital because she started to turn blue.
At first the nurses thought that she had aspirated but to be on the safe side an echocardiogram was done. This was how her heart defect, Total Anomalous Pulmonary Venous Return (TAPVR) was discovered. TAPVR is a rare heart defect where the pulmonary veins don't connect to the correct place and it requires surgery to "rewire" the pulmonary veins so that blood is able to flow correctly.
Congenital Heart Defects were once thought to be hopeless and not much was known about any kind of treatment (most patients would die due to "heart failure"). Although there is not a cure or a way to prevent CHD from happening, there is a way to treat CHD through surgery and/or heart catheterization. Stella has had two open-heart surgeries and her heart is currently really stable. It is a blessing that Stella was born during a time when these medical advances were available, but I believe that there is still a lot more that can be done to help treat CHD so that it is no longer the number 1 cause of birth defect related deaths.
