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Submitted by PatientsEngage on 9 February 2020
A poster that says Congenital Heart Disease

A diagnosis of Congenital Heart Disease can be earth-shattering for a new mom. A mother shares the series of corrective surgeries her young baby has to go through, the effect this diagnosis had on her and the family and how she has dealt with it.

Initial Symptoms

2 days after my son was born, I turned to my husband and said “ I have never been happier in my life!” Little did I know my joy was going to hit a major speed bump less than 24 hours later. The paediatrician who was part of my labour and delivery team came to us the next morning and said he heard a small murmur in my baby’s heart. It was a common occurrence and probably nothing but just to be safe he wanted to check it out with an echo. I didn’t think much of it at the time because while I had heard of congenital heart issues, it couldn’t possibly happen to me…right?

Now when I think back, I realize that there were symptoms, but as a new mom, I didn’t really know what to look out for. My son had trouble latching and his cry was much softer than the other babies in the nursery. In fact when my mom heard another baby cry in the nursery, she came to me and said we will wait another day or so before we take our little munchkin home.

Diagnosis of Congenital Heat Disease and Surgery

When the doctor did the echo, we learnt that my son had a condition called Tetralogy of Fallot. TOF as it is commonly known, is a combination of 4 congenital heart abnormalities – a ventricular septal defect or hole in the heart, pulmonary valve stenosis, misplaced aorta and a thickened right ventricular wall. The doctors told me that if our child had to have a heart condition, then this is the one we wanted. This was the one most commonly known and treatment was easily available. They shifted my son to another specialist hospital within the city that had a pediatric cardiac wing. The next 4 days were a blur. All I did was cry, cry and then cry some more. My family cried with me but through their support and by leaning on each other, we knew we had to get through this for the little baby who was in the ICU hooked up to IV lines and machines. I was in no condition to care for my baby. My mom and my uncle took over my son’s care and managed everything.

Speaking to the doctors, understanding what was wrong, what needed to be done etc etc. I was just there. Suddenly one night my son’s blood oxygen levels started to drop and the doctor’s wheeled him into emergency open heart surgery at 2 am. All I knew was that they were going to do put a shunt in my son’s heart so that his heart could perform until he was a little older and they are able to correct the abnormality via another open heart surgery.

This surgery took 11 hours – the longest 11 hours of my life. But I knew 2 things –

  1. I was the only voice he knew, I was his safe place, so even though I wasn’t allowed to go near him or touch him, I had to stand outside his ICU room door and sing to him. He needed to know his mom was there.
  2. I had to stop relying on family and take the driver’s seat on his care. I am his mom after all. And I wasn’t going to desert my son under any circumstances.

More Surgeries Follow

But, we were not out of the woods yet. Even after the surgery, my son’s oxygen saturation levels were fluctuating constantly. They should have been holding steady in their 90s but kept ranging from 60 to 100. Doctors tried caffeine to stimulate his brain’s respiratory centre, vasodialatory therapy to eliminate high lung pressures but nothing seemed to work. After about a month, they sent him home. While they didn’t exactly say it, we knew that they were sending him home because there was nothing more they could do to help us. Once we were home, my son was pretty much a normal new born. He would eat, sleep, poop and repeat. But I knew his saturation was fluctuating. He was home for about 10 days when he fell terribly ill and had to be rushed back and admitted in the hospital. In those 10 days, I was probably the worst mother in the world! All I was interested in doing was sleeping. Morning, noon and night! My mom stepped up and put her grief aside to take care of my baby. She loved him and cajoled him and did everything for him and took care of me as well. She really is super woman!

Since we were back in the hospital, the surgeon felt that over time, once my son would gain a little weight, his saturation would stabilize. After another 45 days in the hospital, one fine day, my son’s saturation had stabilized. It was not dropping anymore. I was still scared, worried and nervous as ever and by this time I realized I needed help. So I was advised to see a psychiatrist who put me on low dose Zoloft. I was diagnosed with Post Traumatic Stress Disorder. I was so scared to bring my son home. Not knowing if I will be able to care for him. What if something goes wrong or his saturations drop again. Doctors kept my baby in the hospital for a few extra days to give me the confidence. They allowed me to do everything under the watchful eyes of the nurses. Finally, we were ready to go home. We were discharged with just a few low dosages of basic supporting medications, a few vitamins, a diuretic, heart supporting medication and a low dose of blood thinner. These would soon stop over the course of the next few weeks.

Rehabilitation and Therapy 

When my son was about 8 months old, he had gained enough weight to have the corrective procedure and hence had to undergo another open-heart surgery. This time we were prepared and the element of surprise no longer existed. It was a much smoother operation and one that gave us peace of mind and allowed us to relax after it was done.

We are now a year post the second procedure and my son is not on any medication. He is an active and completely normal and playful child. Looking at him you cannot even imagine he has been through such big surgeries. He is extremely sharp and astute and a very happy child. He goes to various music classes and a mother toddler program. He does have a few physical delays, because the left side of his body is slightly weaker due to the repeated cutting. We are addressing this with regular occupational and physical therapy.

Find Your Support Systems 

I would not wish any parent to go through this. But if you have to go through this, family support is a must. Experiences like this can make or break a marriage. While it is tough for a father to go through this, it is a 100 times tougher for the mother. She has after all carried the baby in her womb and the father is yet to form a bond with the baby. Dad’s support to the mom is a must! Do not shy away from seeking mental help for yourself if you need. Do not desert your baby, he is after all in a whole new world and you are his only familiar anchor. There is not much available in the way of support in India but turn to social media and Facebook. Join CHD groups from across the world and seek out support. Read up on medical journals and set up Google alerts relating to your child’s condition so you are aware. Find your child an amazing pediatrician who will bring his whole care together. Listen to your gut – a mom’s gut knows best. Depending on your child’s condition, you will feel that you are unable to enjoy certain perks of your baby’s first few days. Frankly, it sucks! But look at the larger picture, your child has gone through the worst phase of his life at a time he will not remember. Now life will only throw good things his way. If you believe in God, turn to him for inner strength and peace. Start telling yourself that the surgery scar is a victory wound so that your child is never embarrassed about it when he grows up. If you believe in alternate therapies like Pranic healing, or homeopathy, please do indulge in them. Take help from wherever it is offered.

Acceptance of the scars

Recently, my son was at a pool party and he realized that the scars on his chest were different as his friends all had smooth chests. So I got him a doll which had scars on his chest just like my son’s. You can never begin teaching them acceptance early enough. I am really lucky to find an amazing cardiac surgeon, cardiologist and an outstanding pediatrician. Your child’s pediatrician will bring his whole care together. So find someone who will support and counsel you when needed but who will genuinely care for your child. I am extremely lucky to have found doctors who care for my son like a mom!

The 5 stages of grief are denial, anger, bargaining, depression and acceptance. It has taken me over a year of love, support, counseling, medication and seeing my child blossom to reach acceptance. But on bad days, when I work myself into a tizzy, I do swing into the various stages of grief. When you are hurting, people will tell you not to cry. But I say, please cry. Punch a hole in your wall, kick a dent on your car door, bang your head on the door, and break some china. It doesn’t matter. Do what you need to do. Get it out but constantly be there for your child. Think about me and remember..Congenital heart disease is not the end of the world. You still have a beautiful new baby and you might have to wait a tad longer to enjoy them, but enjoy them you must!

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