My last post was for Heart Dads. This series of posts is for Heart Dads. Sadly, not very many Heart Dads will read this, if any.
I asked for feedback, via Heartwaves, Twitter, and Facebook, from dads about things that they did to support the moms in their lives. I didn’t get a single dad-response. To my knowledge, not a single dad read the post. When I attend our monthly support group meetings, out of 50 or so people in attendance, there may be 5 dads present. At our other events, there is usually less than 25% of dads that attend. 88% of the “Likes” of the Heartwaves.org Facebook page are female. Only about 15% of the people reached through Heartwaves.org are male.
Why?
Why aren’t more Heart Dads involved in the CHD world? I don’t believe that these men don’t care about their kids. I don’t believe that they don’t care about CHD awareness or advocacy. So what is the problem? Does the programming at support group meetings not interest them? Do they not feel included? Are their work hours too much to be involved?
There are some amazing Heart Dads, who are doing some great things for the CHD world! Jared Broussard is the founder of this site, Heartwaves.org, Matt Hammitt is the founder of the Whole Hearts Foundation, Tommy Riles is the founder of the website Life of Dad and a philanthropist for the Children’s Hospital of Los Angeles. What separates them from the other dads, what caused them to take an interest large enough to act?
I do believe that some of my above solutions can account for some lack of involvement. I think that if support groups had better programming for dads, more might come. I also believe that it is easier for dads to feel left out through this experience. But this doesn’t answer all of the questions, and to be honest, I don’t know the answer.
I do know that Heart Dads need to get it together and get involved! If you want better programming, voice your thoughts and suggestions! If you feel left out, find a way to get involved! You don’t want your child to grow up and think that only moms can raise awareness and advocate for CHDs. You don’t want your child to feel like you don’t care about their defect and what it means for their life.
This is your chance, this is your forum, this is your place to voice your opinions and concerns. Please let me know what needs to change to get you involved. Let me know why you don’t attend meetings and events. If you are involved, let me know why. PLEASE prove the numbers wrong! Show up, be heard, make an impact!
Moms, if you know that the Heart Dad in your life needs to read this, please share it with them. Also, feel free to voice your thoughts and opinions too. Share this post on your blog, on your Facebook, on your Twitter. Help me get the dads involved.
Trent Hamilton
Tucker's Dad, Heartwaves Blogger, Whole Hearts Team Member
When I share my story with other CHD families, a common question I am asked is, “did your parents wait long before having any other children?” I always laugh after being asked this question; for those of you who know me, you know that my brother and I are just 16 months apart. He was born just two months before I was scheduled to return to Philadelphia for my second surgery. About a year and a half later, we were blessed with a younger sister and 2 years after that, just 13 days shy of my 5th birthday, Carley Rae Gillis entered the world completing our family of 6.
Each of my siblings was born with a healthy heart. Growing up, they did not experience the struggles I went through in the heat of the summer. They were able to play (or at least attempt to play) sports in middle school and high school, they didn’t get short of breath during our family trip to the Grand Canyon, they never had to take medication, they were allowed to participate in recreation time every year at camp, my parents were never as hesitant to allow them to do various activities as they were me.
Being a sibling of a child with a CHD can’t be easy. Shortly after he was born, my brother was left in Texas with my grandparents and my parents’ best friends while we went to Philadelphia for my 2nd surgery (yes, he did come visit a few weeks later). Every other year for about the first 10 years of my life, my parents and I would go to Philadelphia for a few days to visit Dr. Norwood and his team and would always leave my brother and sisters behind with family. Momentous occasions (high school and college graduation) were ALWAYS made a bit bigger of a deal when it was my turn. Through all of this, I never once heard my brother or sisters complain. Yes, growing up we couldn’t go snow skiing and we’d joke around and they would always say, “Thanks a lot, MB” but I never felt personally ridiculed by them.
As we’ve gotten older, we have all become more and more aware of the severity of my CHD and the blessing it is to each of us that I’m doing as well as I am today. I could not ask for a better support system from my brother, sisters, and now sister – in – law and brother – in law. This past February, I had the chance to go to Houston and participate in a heart walk for “It’s My Heart”. I was blessed to be joined by my mom, sisters, Whitley and Carley and sister – in – law, Sarah. My brothers and sisters are always more than eager to support me in any and everything I do when it comes to raising awareness for CHDs. They have been one of the best support systems I could ever ask for and for that, I am eternally grateful.
I know being the sibling of a CHD kid isn’t the easiest journey but I couldn’t be more blessed by the fact that my brothers and sisters have embraced their calling with nothing but love, willingness and encouragement over the past 25 years. Thank you, Campbell, Whitley, Carley, Sarah & Ryan. I appreciate and love each of you more than you’ll ever know.
*the top picture was taken in 1991 or 1992
*the bottom picture: (L-R) my brother, Campbell with his wife, Sarah, me, my sister, Whitley & her husband Ryan, and my sister, Carley
Maribeth Gillis
Heartwaves.org Blogger
For babies born with congenital heart disease, receiving human milk for heart babies, ideally from the infant’s own mother, is of great importance. Babies with CHD are at-risk for infection and poor weight gain. Human milk can help to prevent necrotizing enterocolitis (NEC) and other infections and is more easily digested than formula.
Necrotizing enterocolitis (NEC) is a bowel disease most often affecting infants born prematurely, although “the incidence of NEC is greater in neonates with CHD than the normal newborn population.” (Giannone PJ, Luce WA, Nankervis CA, Hoffman TM, Wold LE, 2008) Infants fed human milk are less likely to develop NEC and other infections than formula-fed infants. It is good for all parents to consider their feeding options to make the decision they feel works best for their child.
According to the World Health Organization the hierarchy of infant feeding in summary is (1) breastfeeding; (2) mother's own milk expressed and given to her child in some other way; (3) milk of another human mother; and (4) artificial milk feed.
Families wishing to breastfeed their babies should seek assistance from a Board Certified Lactation Consultant (Find an IBCLC near you). Your baby’s congenital heart disease may affect his or her ability to feed well at the breast. (Trouble nursing is actually commonly reported as one of the first signs that “something” was amiss among parents whose child’s CHD was not diagnosed prior to birth.) A lactation consultant is a trained breastfeeding professional who will work as a member of your child’s care team to determine feeding goals.
For a mother desiring to provide her own milk for her baby, but who is unable to latch her infant and breastfeed, establishing a milk supply with pumping will be crucial. The support and guidance of a lactation consultant for mothers needing to pump their milk is just as important as when a baby is nursing at the breast.
Sometimes a mother is not able to provide her own milk, or can only do so for a limited amount of time. If this is the case, parents can inquire about the use of donor human milk. Human milk donors must go through a screening process and then the donated milk is pasteurized before being used in NICUs and other settings around the world. Parents interested in feeding donor milk should contact their child’s dietician, the hospital lactation consultant, or refer to the Human Milk Banking Association of North America(HMBANA).
The final option is the use of artificial milk feeds. Your child’s team of health care providers will include a dietician who will work to determine appropriate feeding goals. The dietician can assist your family and medical providers in selecting a formula and feeding plan for your child. Dieticians can also teach parents about proper formula preparation and feeding.
Because infants with CHD often struggle with poor weight gain, even those being fed their mothers’ milk are often supplemented with formula or the mothers’ milk is fortified; that is, mixing human milk with a human milk-based or cow’s milk-based product to increase caloric content. Your child’s lactation consultant, dietician, and medical providers will work together to determine what is appropriate for your child’s needs.
What was your experience in feeding your CHD baby? Were you able to breastfeed, or did you need to pump your milk? Did you use donor milk?
JoEllen Noble
Mission Impossible: The CHD Weight Gain Battle
Your mission, if you chose to accept it… make your heart child gain weight, any weight, just something measurable!
Since the moment our heart baby screamed for the first time, one of our biggest battles has been to put weight on her. I’m not talking about the kind of weight that makes her in the “normal percentile” (whatever that means) I’m talking about the weight that makes her actually ON the chart.
I took this photo of my daughter’s baby book because this is the best way I could describe our struggle right from birth. Between November 17th and January 6th, we were at home, unknowing of her heart issues, but it definitely reflected in her weight! Her hospital admission was January 6th, her first open heart being on the 19th, and we were discharged on the 31st.
Our battle with her weight didn’t end with surgery. Brenna was notorious for vomiting. Anytime. Anywhere. Even if she had just woken up from sleeping through the night, she could throw up an entire belly full of milk. Her episodes were so frequent that we no longer brought her to other houses for fear that she would ruin people’s carpets. We were referred to GI at Children’s Hospital Boston and after a series of tests, blood work, and ultrasounds, it was decided that because of the complexity of Brenna’s heart and the lack of adequate blood flow to her stomach, she had a condition called gastroparesis. Essentially, her stomach wasn’t emptying at the normal rate, so milk would just linger in her stomach until the only thing left for it to do would be to empty by way of throwing up. The solution was to put her on a periactin to make her digest faster. Within a month, Brenna put on two full pounds! Having never seen a weight gain this large, this medication was like a godsend! The vomiting slowed, and has allowed her to put (and keep!) some weight on.
There has also been a strong correlation between Brenna’s weight gain and her need for another cardiac intervention. With two open hearts and at least a handful of caths under our belt, it is safe to say that we are comfortable with the events that lead up to an intervention. Before in intervention occurred, doctor visits increased, medications were increased, vomiting increased in frequency, and her weight would hold steady before taking a quick decline. I cannot even count how many times we have driven to the pediatrician’s office for a weight check because sometimes her weight would indicate an issue before her heart rate would.
With Brenna’s heart working overtime, her body requires an incredible amount of calories just to function. As far as her diet is concerned, we have tried it all. We’ve worked with many nutritionists and she’s been on high calorie formulas like Pediasure and Carnation Instant Breakfast, juices and shakes like Boost and Boost Breeze, we’ve sprinkled things like Duocal onto her food and mixed Benecalorie into it. There is an incredible amount of supplemental products on the market to help kids gain weight, but most of them taste gross or alter the taste of food enough to make it less than desirable. We have had some success with Benecalorie, which is a thick liquid that is 330 calories for 1.5 ounces, just don’t add it to a milk-based food or it separates.
We have learned that our cardiac kid may not always chart on the growth curve. She jumps onto it occasionally, we all celebrate, and sometimes she falls off into the abyss. And just like a lot of aspects about cardiac parenting, you learn to just do your very best and let the rest of it fall as it may.
Nikki Garcia
Heartwaves Blogger
As the founder of Heartwaves.org, the core of our existence is in offering the chance for families hope through communication and connectivity. There is no better way to cope with our different life challenges than through bonding with other families who have "walked a mile" in our shoes. Through this connectivity, it is our hope that families can perservere through any life challenge. If you read any of our blog articles, you will see this perserverence happening in so many different ways.
As many of you know, we offer a free inspiraitonal message every day called The Daily Wave of Inspiration. It is a daily motivational message for our congenital heart defect families.
I recently read a story that reminded me of all of the reasons why Heartwaves.org and The Daily Wave of Inspiration were started. The story is a true inspiration for the congenital heart defect community. Although the story centers around a paralyzed woman and her dedication to acheiving a goal through significant challenges, it is certainly a moving message that can be applied to anyone going through any type of life challenge. As you read the story about Claire Lomas (click Here for the entire story), the parallels of her thoughts, feelings, and challenges are no different than the hurdles and thoughts that we face as congenital heart defect parents.
One of her quotes in the story really resonated and stuck with me. In the story posted by ABC.com, Claire stated, "After my accident, for a few days, you think, why, why has this happened? But it has. And that's that. You just need to find new things to do," she said while on her way to a party in her honor. "Of course I have bad days and difficult times. But I just get through them, and gradually, things get better." I am sure many of our Heartwaves.org community members can relate and lend great perspective to Claire's struggles. But more importantly, can you relate to her perserverance? Because to me, that is what is more important. As a parent of a child with a complex congenital heart defect, it is your perserverance that is the key in moving forward in life. What are you doing to perservere?
We all have a choice to make when we are dealt with unexpected challenges in life. And, in my opinion, one of the most important decisions for both you and your child is the choice you make in how you will move forward with these trials in life. Everyone's case, condition, or story is different, so I am by no means trying to assume or state that everyone should bounce back or react in the same way. In fact, depending on each person's situation, the way an individual endures will always be very different.
For Claire Lomas, thriving through a difficult time in life is the core of who she is as a person. Obviously, completing a marathon as a paralyzed person is one of the most motivating and inspirational accomplishments that anyone can ever acheive. For me, it puts life in perspective and gives us all hope and encouragement.
I am interested to hear what your thoughts are regarding Claire's story. What did you learn from it? Did it speak to you in any way? I would love to hear your input and feedback.
Jared Broussard
Heartwaves.org
Our oldest daughter, Taylor, is 12 (working really fast on 13) and is finishing up her first year of middle school. Last week she had try-outs for the middle school dance team. In middle school, everyone gets on the team, but they split the girls into two groups based on ability. All her friends got on the "A" team and she was placed on the "B" team. You can imagine the drama and tears that came about our house. Not because she was one the "B" team, but because she'd been separated from her friends. She decided right away she was going to quit. We responded quickly with a "No you're not!" I told her that she had to decide if she was going to sulk all year and be miserable or if she was going to change her at attitude and enjoy dancing. She loves to dance but she's awfully attached to her best friend so it was going to do her some good learn to do her own thing. Wednesday night and Thursday morning were rough, but she came home from school Thursday night with a smile on her face and a bounce back in her step. In true scared parent fashion, I didn't ask what happened at school that day for fear of bring the tears back but tonight as we went to get measured for her uniform I got up the guts to ask. She told me that she'd decided she was going to be SOOOO good, they'd decide to transfer her to the "A" team. It made my heart so proud (and I told her so) that she's made that choice. It also made me realize just how grown up she's getting!
It also got me thinking about being a heart mom and a mom to a child with Down syndrome. It's not the team we expected to be on. We thought we'd have a child just like all our friends, but we got a different plan.
We had the same choice as Taylor. We had choose whether we were going to
- sulk in the fact that Anna is different,
- be frustrated that we spend days and weeks in the hospital,
- hate the daily med routine,
- cry over the unknowns, and
- stomp our feet like two year olds while screaming "NOT FAIR"
or if we were going to
- accept the fact that she is like no other with joy and amazement,
- be thankful for the doctors and nurses that keep her healthy and alive
- watch in wonder of all she can go through with a smile on her face
- embrace the new friends and support from the new "clubs" we joined the day she was born.
It's a choice of how you face each day. Its a decision of how you look at your child. You bet there are going to be days when you cry and throw tantrums, but you have to remake that choice to see the silver linings. It's not always easy, sometimes it's down-right hard, but I can't imagine not being Anna's mom. And I can't imagine Anna any other way.
I’ve been a heart dad for almost 3 years now. It is really tough sometimes, but it is also very rewarding. Being a heart dad is different than being a heart mom. I’m not exactly sure why there are some differences, but I think it is similar to why the pregnancy is different for the dad than the mom. Moms deal with the heart baby one way because they just carried the baby for 9 months; it is a part of them. They also tend to feel like they may have done something to cause the heart defect more than dads. For heart dads, we didn’t carry the baby, and we may not have even had an opportunity to hold the baby before they have their life-saving surgery. There are very different feelings and attachments for us than for moms.
Because of these differences, I feel like heart dads struggle to know how to react and what to do, especially when the baby is still in the hospital. For me, I tried to support my wife, Dena, as much as possible. I took charge of updating the family through our CaringBridge page, I tried to manage our visitors, I tried to learn as much as I could about the defect and the surgeries, and I worried about the finances. Ultimately, as I look back, I think that my goal was to make things as easy on Dena as possible so that she could devote her time to being Tucker’s mom. At times I felt lost, especially when I returned to work and left her at the hospital to sit with Tucker. I struggled with feelings about not being there and that I wasn’t doing enough.
In my next series of blog posts, I want to take a look at what makes a heart dad tick. I want to offer advice for new heart dads so that maybe they won’t feel so lost. I want to share what I learned about getting financial assistance for the medical bills. I want to offer suggestions for heart moms about things they can do to help and support their husbands or partners.
Sadly, the vast majority of people who read this post will be moms, grandmas, or other women involved in the CHD world. There won’t be very many dads who find their way here. My next post will focus on this fact. If you are reading this and you are a woman, please share this with the heart dad or other man in your life. I think it is important for them to read and be involved in this discussion.
I’m also asking that you comment and offer suggestions to me on possible topics to cover in this series for dads. If your husband or partner did something very supportive or amazing for you to help in dealing with your CHD child, please share it with me and I will include it in my advice. If your partner didn’t do something that you wish he had, please let me know that too.
If you are a heart dad, and you are here, YAY! You are definitely in the minority. Please share your advice as well. If you did something special to support your wife or partner, I want to hear about it. If you have advice for dealing with finances or balancing time at work with time at the hospital, please comment. Also, please share this with other heart dads that you know.
Trent Hamilton
Tucker's Dad, Heartwaves Blogger, Whole Hearts Team Member
Scars. They all tell a story. A congenital Heart Defect Scar is no exception. Most kids scar stories are from falling off their bikes or off of the monkey bars. When kids used to ask me about the scar on my chest, I would say that I have a broken heart and the doctors had to take it out and fix it and they cut open my chest. Yeah, try being 5 years old, telling other kids that! I have always loved my scars, from a young age untill now. I was never ashamed of them, but I did not like to show them off.
As I got older, I wanted everyone to treat me normal and I knew if I hid my scars, that they would never know I have a heart defect, so they would not treat me differently. I have had most of my scars at such a young age that I don’t know what I would look like without them. I see a few people who are so ashamed of their scars, but why should we cover them and keep their story hiding. There are stories behind them that are so powerful and meaningful, so what if we are different. Shouldn’t we want to be unique and different? Our scars show how strong we are and what we go through more then any one will in their lifetime. I love it when people ask me about my scars. I would rather them ask me about the scars than stare at them as that becomes a very awkward situation.
When people do ask, I love telling them about the stories that are behind them now that I am older and understand how my heart works and what was wrong with my heart. Meeting little ones and being able to tell them and see how excited they are to see that I have a scar like them, always gets to me. I remember when I was 4 years old and had never met anyone who had a scar like mine, but now I have met so many people who had open heart surgery and seeing their scars makes me feel not alone. J
If I can give advice to someone who is ashamed of their scars, it would be to nothate them and feel like they are worthless, but that they tell your story and make you strong!
Heartwaves.org Blogger
I think there is something to be said about parents who have medical children. They grow a thick skin, become numb to some of the trivial things in life, because it’s the best way to cope with what life has dealt you. We’ve seen a lot, experienced things other parents shouldn’t, and probably will not ever have to. The majority of the responsibility to take care of our heart baby always rested on me. My husband works insane hours running a retail store a few towns over and he does a magnificent job, so my “job” became house wife, full time mom, and nurse.
This past weekend I was invited to attend an event for It’s My Heart. The New England chapter was having an Egg Hunt and other moms I have connected to sent me an invite over Facebook. It’s actually amazing the array of emotions this invitation gave me. Do I go? Should I actually meet other parents with kids like my own? What would I say? Do I have anything in common with these people, other than our kids having heart defects? I put aside my hesitations and went for it. Click… invitation accepted!
So, Saturday morning, I loaded up the girls, went and picked up my own mother, who had decided she wanted to see the girls hunt eggs, and traveled only 30 minutes to the park where the event was held.
The event was well organized, fun, and the girls had a blast, despite the cold and very windy weather. But, to me the event meant a lot more than just schmoozing with a few heart parents. There must have been around 20 very young heart kids there, add to that their siblings. I guess I have become accustom to only seeing heart kids in a hospital setting, either laying in hospital beds with leads hooked up to the monitors, or walking (very slowly) around the hospital with I.V.s and those rolling I.V. medical hooks. These kids were happy, smiling, and most were running to find eggs all over the field. What an inspirational moment. These strong kids made it through things that may not have been possible some years ago and are enjoying life as if nothing bad ever happened to them. It makes me wish that parents in the hospital at this moment, dealing with things we have overcome, could see those kids and see a future that may be slightly blurry for them now. It proves that there is hope for CHD Children. Its gives me hope for the future of my daughter, and keeps me reminded of why staying close to the heart community is so important.
Nikki Garcia
Heartwaves Blogger
I've never been in this position before. I have never faced a heart cath or heart surgery as a wife, mother, and grandmother. A Heart Cath for a Gramma is kind of new to me. Last time I was a daughter and a sister. I was just a young girl. I don't remember being too scared or anxious. I do remember feeling bad seeing my mom with tears in her eyes.
I have had activity intolerance since I had my arrhythmnia crisis and ICD placement. My former cardiologist (who does not specialize in CHD) would just tell me that I am doing fine. To live within my limits. The last time I saw him he told me "You are the healthiest patient I've seen all day." I finally listened to that little voice that told me there must be another answer.
One month ago I went to a new cardiologist. One who specialized in Adults with Congenital Heart Defects. My new doctor told me that he felt my pulmonary valve had definite regurgitation and that he felt he could give me significant improvement with surgical correction. Last week I had a heart cath. One purpose will be to determine if my pulmonary valve can be corrected with a Melody Valve or if I will need Open Heart Surgery for an Edward's Tissue Valve. I had a 50/50 chance either way! He also planned to place a stent at the site of my original Blalock-Taussig Shunt placed 55 years ago.
When he left the room I cried. I cried because I will be able dance and run and play with my grandchildren, I will be able carry my 20 pound grandson up the stairs, I will be able to ride bikes and hike with my husband. All without huffing and puffing or having to sit down.
Later that day, after I had told my husband and children, I had an "Oh, no!" moment. All I could think about was how am I going to tell my 86 year old dad this news. It did take me a couple of days pondering about it before I could go to his house and tell him. Naturally, I gave him best case scenario. I didn't lie, I just glossed over the possible Open Heart Surgery.
Last Tuesday, April 17th, I had that heart cath. The site of my BT shunt looked fantastic. No narrowing at all. No need for a stent. It also showed that I essentially do not have a Pulmonary Valve. Also, a Melody Valve will not be possible. This was my hope, but I am honestly OK with having Open Heart Surgery again.
This time will be so different from 40 years ago. I never felt I could talk to my parents or friends about how I was feeling. My friends from school really had no idea what was happening to me. But this time I have the support of so many people. Heart sisters and brothers that I have met thru ACHA, Facebook CHD groups, and Heartwaves. Last time, my mom's fears outweighed mine. This time I have a rock solid husband, incredible children, grandkids I can't wait to run with, and so many new friends from the CHD Family.
Surgery will be scheduled for early June.
My Personal Blog HeartStrings
HERE
If anyone has any questions please leave me your comments and email.