We have a parent who has been reading Kidsstoppress.com ever since it’s inception and has decided that she would like to contribute her story on Congenital Heart Defect. We are delighted that Anandita’s journey in battling Eczema for her daughter has encouraged so many new moms to come forward and share their stories that would actually benefit so many parents who are battling the same health issues for their kids each day. We urge you to share stories of your journey with the other parents so they can help from your learning’s and journey.
Here is her story. If you have any question please feel free to email on chdbabiesindia@gmail.com or share your questions in the comments below
My son was born at 34 weeks weighing only 1.4 Â kgs. We knew beforehand that the baby would require NICU care since I had a few complications during this pregnancy – thanks to all the technology and my gyenac. What we didn’t know were the hidden complications that baby had. So, I delivered the baby at a hospital with the best NICU facility with the most well known and talented neonatal specialist doctors in the city.
The first 24 hrs he did great, the doctors told us that we will be taking him home very soon, he just needed to put on some weight. However, from the second day of his life the complications began. He started having breathing difficulties and in no time it worsened so much that he had to be incubated. We were devastated, not able to understand what was going on as the doctors had no explanation at that point. They started running all kinds of tests on him. Finally we were told that he has an open PDA which is flooding his lungs because of which he is having breathing issues.
What is Patent ductus arteriosus (PDA)?
All babies are born with a small opening between their pulmonary and aortic valves.
- While a baby develops in the uterus, it’s not necessary for blood to circulate through his lungs because oxygen is provided through the placenta.
- During pregnancy, this opening is necessary to allow oxygen-rich (red) blood to bypass the baby’s lungs and flow into the body.
- This passageway is called a ductus arteriosus
At birth, when the placenta is removed, the baby’s lungs must now provide oxygen to his/her body. As the baby takes the first breath, the blood vessels in the lungs open, and blood begins to flow through and pick up oxygen.
At this point, the ductus arteriosus is not needed to bypass the lungs. Under normal circumstances, within the first few days or weeks after birth, the ductus arteriosus closes and blood no longer passes through it. Most babies have a closed ductus arteriosus within 72 hours of being born.
In some babies, however, the ductus arteriosus remains open (patent). The opening between the aorta and the pulmonary artery allows oxygen-rich (red) blood to pass back through the blood vessels in the lungs. This is called patent ductus arteriosus.
The treatment for this wasn’t very complicated. An intravenous (IV) medication called indomethacin was started and we were told that in 48-72 hrs the drug usually works and the PDA  should close in most cases. Unfortunately we weren’t one of those cases.
Meanwhile, our pediatrician had already suspected something more so he scheduled one of the best pediatric cardiologists visit to the NICU to check the baby. While the cardiologist was performing the 2D echo, our heart was in our mouth and I was about to choke any minute.
Alas, we had another set of bad news. The cardiologist told us that the baby had a large VSD.
What is ventricular septal defect (VSD)?
Ventricular septal defect is a congenital heart defect in which there is a hole in the wall between the two lower chambers of the heart, known as the right and left ventricles.
In patients with VSD, oxygen-rich (red) blood passes from the left ventricle through the opening in the septum, and mixes with oxygen-poor (blue) blood in the right ventricle. This can place a great deal of pressure on the lungs.
So these two were the primary causes for my sons heavy and fast breathing. However, in a lot of cases of muscular VSD the holes close on its own without any intervention but it depends on the size and the location of the hole. But nature had a different plan for us!
Our cardiologist suggested we wait a while till the baby gains a little more weight and with the help of medications the lung pressures would be regulated. So he was started on diuretics
Once he was set with his dosage of diuretics and his weight gain was positive we were given a heads up to take him home. So after 45days weighing 1.8kgs we got our son home for the first time. No other family had seen him as visitors were not allowed in the NICU. Even my daughter touched him for the first time that day. We kept him in absolute isolation at home too. We had set timings for his medications and feeds.
We had to visit the cardiologist every 15 days to check the status of his VSD& PDA and his lung pressures. Every single minute of every day I prayed for his VSD & PDA to close on its own. But it did not happen. On our 3rd visit our cardiologist told us that it was time for us to get him operated as the pressures in his lungs were rising.
Once again we were devastated, shattered…open heart by-pass surgery for such a tiny baby!
Somehow we gathered ourselves and started our research on best surgeon and hospital. We had two options in hand. We met with both the pediatric cardiac surgeons in the city and took reviews from family and friends, we choose our doctor and finalized a date for the surgery.
Finally the day was here…we got him admitted to the hospital a day prior as they need to run tests before the surgery. He was 3.3 kgs and 3 mons old at that point.
The surgery went on for 6 hrs…every single second of those 6 hrs was absolute torture for us. It was the longest 6 hrs of our life!
Finally the surgeon came out and reassured us that the baby was doing fine and the surgery went well. They had closed the PDA and a patch was placed to seal his VSD. He also mentioned that it was a good decision to get the surgery done as the VSD was quite large and if we would have waited any longer then it would have affected the lungs.
Then he was transferred to the pediatric cardic ICU (PCICU).
PCICU had around 25 beds and the PC ward had around 30 beds and can you believe it that all the beds were full!!! So how common is this? 1 in every 100 babies is born with a CHD. That’s a huge number and that’s the sole reason for me to share our journey, i.e. to create awareness. It’s always good to be aware because you never know what life has in store for you.
What are some symptoms of CHD?
Symptoms of CHD in infants and children include:
- cyanosis(a bluish tint to the skin, fingernails and lips)
- Respiratory Distress and poor feeding
- poor weight gain
- recurrent lung infections
- inability to exercise or play vigorously
Treatment is based on the severity of the child’s heart condition. Some mild heart defects don’t require any treatment. Others can be treated with medications, interventional procedures or surgery.
But the key here is diagnosis and getting treatment on time. Even a normal full term baby can be born with a CHD. We all strive to have healthy babies but sometimes things are just not in our hands. All we can do is be aware and stay strong!
My son was discharged from the hospital after 10 days. He has been doing great since then.
We had his last 2D ECHO done a month back and his cardiologist said that his heart is as good as any normal kid and that he might be the next Ronaldo. Well, I don’t know about football but today, my son turned 1 and he is a bundle of energy we can’t match up with!
A special note to moms:
If your baby is diagnosed with CHD, please remember that in most cases, CHD has no known cause. Most of the time, there is no identifiable reason as to why the heart defect occurred. Mothers often wonder if they did anything to cause their baby’s CHD but as a mom, I know we take all the care during our pregnancy and so there’s no need to be guilty. Take Care!
Reference Articles:
http://www.childrenshospital.org/health-topics/conditions/c/congenital-heart-defects
KSP Team
Parul Gupta
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