What to do when your child has CHD?
Feb 15, 2023
Published first on May 10, 2012 (link) by mom
This week has been very emotional for me. It's my baby angel's 1st year anniversary. The same week last year, we were at Manila prepping for an open heart surgery. We were at the front seats as miracles unfold infront our very eyes. We were hoping for a grand ending but God has better plans. How fast time flies.
It must be more than a coincidence that on the week of Nate's 1st year anniversary, we are helping another child get better. This particular parents, unlike the previous parents we helped, are unique because I know them way back when we were in high school. We met at Red Cross as youth volunteers. Their second child, Maven, has a congenital heart defect called Tetralogy of Fallot. The same case as Nate. The parents found us through Nate's fanpage and from friends of friends.
Talking to them makes me re-live what I've been through. Hearing them makes me remember how confused I was. We were on those parents' shoes a year ago. I empathize with them. I want to help.
Research, research, research. If there's one gift that came handy during that time, it was my ability to research. I'm a good researcher. You need to be too. Use the internet, interview pediatric cardio specialists. Learn. Get to know your child's condition. Be on top of it. Remember, just because you know things does not mean you can be your child's doctor. Know who to trust. Ask the right questions. The doctors may be harsh and sometimes too cold, I know. Don't hate them. They are simply stating the naked facts. This will help you take the condition seriously and take it with sense of urgency.
It is not your fault. It's not because you had colds or occasional headache when pregnant. It's not because you were moody. It's not because you drank something or ate junk. There's no reason. No one can predict. You can try to explain but you can never pinpoint why. Trust me. I've been in that blame game too. How is blame important, anyway? This is the time for finding solutions. The faster you rise up from that dark pit, the faster you can act and find solutions for your baby. Don't be part of the problem. Be part of the solution.
Seek a support group. We may have several friends and a close-knit family. However, it would help to find a group of others who have the same experiences as you. When I went through my journey with Nate, my great need was someone to talk to and someone who understands exactly how I feel. I needed someone to point me to what I need to do first. There was none, at that time. We are fortunate that we have these support groups now. In the Philippines we have Heart Warrior Philippines that is based in Manila. For Visayas and Mindanao, we have Let It ECHO Heart Families. Let It ECHO Heart Families is a group of parents and relatives who have children with congenital heart defect. In this group, we help each other out by sharing our stories of what we've been through and how we go about our CHD journey. We help and lift each other up.
Seek opinions of many doctors. Don't stop in second opinion. Go for the third, fourth, fifth, nth. Don't stop within the country. Go beyond the borders. Within Cebu, seek Dr Anna "Wee" Cabaero. In Manila, seek Dr. Luisa Go, Dr Dexter Eugene Cheng of De Los Santos Medical Center, or Dr Charles Cuaso of Chinese General Hospital. You may seek Dr Julieta Balderas of Philippine Heart Center too. They can refer you to the best pedia cardio surgeon. I also sought the opinion of a Cebuano doctor at Philippine Heart Center.
While I was searching the net for Unifocalization, the suggested procedure by our doctor, I came across the creator of the procedure... and guess what?! He is still alive! His name is Dr. Frank Hanley of Lucile Packard Children's Hospital at Stanford. I sent him an email and he was very kind enough to reply. With his consent, I mailed him the necessary hard copy documents for his evaluation. After the review during their multidisciplinary pediatric conference, he replied with his official diagnosis. These brilliant doctors do not know each other's diagnosis. Except the opinion of the PHC doctor, all of the diagnosis matched.
During important check-ups with pedia cardio doctor and surgeons, bring someone else. When you are emotionally directly involved, you can't think straight and tend to not ask the right questions. Bring someone else with you. That should be someone who deeply cares for you and your child. While we were in Manila for a checkup, we brought with us our close cousin, and our siblings. You don't have to bring that many a number though.
Seek financial aide from foundations. Most of the Tetralogy of Fallot cases will require more than 1 surgery. A rough estimate for an open heart surgery is 1 Million Pesos. You actually spend more because there is fare, daily food and drink supply, and diagnostic laboratory exams. You will need more help than you think. Search the internet for foundations. There's PAL Foundation, BILD hilft e. V. "Ein Herz für Kinder", Vision4Help, Mending Kids International, Children's Heart Foundation, British Heart Foundation, Sick Kids Foundation, Big Love Little Hearts, Save the Little Hearts, HeartGift, Gift of Life International, and so many others. Check your local options. In the Philippines, we have charity option in Philippine Heart Center, Gift of Life project by Rotary Club, and many others. You can approach DSWD, PhilHealth Zbenefit, and even congressmen and mayor for donations. Email as many as you can. Call as many as you can. Snail mail them hard copy of the documents. Do whatever you can to contact them and get attention.
Seek financial aide elsewhere too. Do fund raising activities such as garage sales, bake sales, and any other creative things you can think of. Look at your loan options. Check with your company if they offer Employee Emergency Fund Loan. My company did and I was able to avail of it. Check with your life insurance policy coverage. See if it covers maternity benefit for your child. I was lucky because my Manulife Eve Devotion life insurance, that I got 6 years ago, covers Tetralogy of Fallot. I got 20% of my coverage amount. At that time, my coverage was 500 thousand. I got 100 thousand from my policy because of that. Imagine if I could have gotten a 500 Million policy? The coverage alone would give me 1 Million outright. Seek help from Philippine Charity Sweepstakes Office. It will require that you go to your barangay and talk to your barangay captain. It will require talking to a social worker at DSWD. It will require lining up at PCSO. It will require you to take a leave of absence from work because lines are much longer during weekends. The requirements are tedious but do it.
Know the right surgery for your baby. Just like in Software, there are several ways to code a functionality. As in the heart, there are several ways to get the heart fixed. You just have to choose the shortest and most efficient way. There's no trial run here. One surgery may make the next surgery more difficult. This is the reason you need to seek opinions of different doctors. See other pedia cardio doctors in Cebu, Manila, India, in the US.
Not everything that's free is right. One of the foundations I sought responded that they only work with a certain doctor and with a certain hospital. If we decide to push on, the surgeries are free. However, the diagnosis of that doctor was different. I felt my son was being compromised. It did not feel right. In times like this, you need to trust your gut-feel. It's God talking to you. We had to let go of that option. That was one of the most difficult decision I ever made.
Touch as many lives. Talk about it with everyone you meet. Allow others to be part of your solution. You'd be surprised how humane people actually are. I know it's difficult because you will have to hold yourself together and not breakdown. Be strong. Make online noise through the social media sites - Facebook, blogs. Make these sites alive by posting an activity every day like a picture of your baby, status of your fund raising, updates from doctors. Because of Nate's FB fan page, a philanthropist herself and Manila Bulletin writer Kcat was touched by his story that she volunteered to write an article for Nate. This was when we came up with a P100 Peso Drive for Nate's heart. Everyone around the world became part of the solution. Read about how my sister met Kcat in Hero Day.
This is a good surgery. This is a surgery for repair. Therefore, think of this as a culmination of healing. Come to think about it, this is actually a joyous event because we can do something about it rather than none. Our education and technology now allows us to do something about it. The condition of your child is repairable. I know it's easier said than done. Have faith. Think positive.
Knee chest position is the first aid of this condition. Babies tend to cry a lot when irate. This may cause difficulty in breathing and the child being cyanotic. When that happens, position him like this and pacify him. The first time Nate was cyanotic, we were in panic and ran him to the emergency room. The doctors placed him in this position and assisted him with oxygen. We actually have a portable oxygen tank at home for emergency use. A good friend of mine gave me a helpful discount.
Pray. Pray for courage and strength. Pray for opportunities. Pray that the people who you talked and asked help are capable and willing to help. Pray that the doctors are given the right knowledge, skills, equipment, and compassion to help. Pray for healing. Pray that you'd have the wisdom to understand God's plan.
I am blessed. I feel God never left our side. My baby Nate was an angel. He came to us at the right time when we needed one. He touched so many lives. He allowed us to witness the wonderful gift of humanity. Thank you everyone for being a part of that miracle.
Our vision is to have a world free from illnesses, defects, and sorrow. Our vision is to help the world be that... one kid at a time.
"Because every child who needs help is a Nate." - Get Better Nate
** From the Bible, Nathan or Nate means "God's gift". Rephrasing, "Because every child who needs help is God's gift".