What to Expect When Your Baby has a Congenital Heart Defect

55 Comments

baby-heart-defect

After the harrowing journey of labor and delivery, I was given the kind of news no mother wants to hear- “Your baby has a congenital heart defect (CHD)”. In my case, Eden was born with Transposition of the Great Arteries- a defect that without immediate surgery, would end in death. So without any preparation or warning, I was thrown into the world of cardiologists and intensive care units. My baby was whisked out of my arms and instead of her first bath, first nursing session and first poop, she was placed in the care of doctors and nurses to suffer through endless poking and prodding. They tried to explain to me what was happening to her, but I couldn’t grasp the enormity of the situation. I didn’t understand about prostaglandin hormones and central lines, I just wanted to know what to expect- in laymen’s terms.

You might be in the same situation. Here is the kind of realistic advice I needed during those first few days:

1. It will take one or two nurses to get your baby in your arms. Every new mom wants to hold and snuggle her infant. A baby with a CHD (prior) to surgery will have several wires attached to her. Expect a central line going through the site of the umbilical cord, as well as other IV lines in her hands or feet, plus all the wires used to monitor her vitals. When you think you want to hold your child, make sure you have gone to the bathroom, had a snack, and are in a comfortable position. Once she is moved into your arms, moving her back to the bed won’t be simple.

Advertisement - Continue Reading Below


2. Nursing may not be an option.The nurses in the PICU might encourage you to nurse her if you planned to breastfeed. If you try, do not get discouraged if it isn’t a feasible option. The lines to contend with, plus a CHD baby’s labored breathing might make breastfeeding stressful. Your baby may be on a breathing machine (CPAP or a ventilator) both of which make nursing impossible. Even if you are unable to breastfeed prior to surgery, you will be able to try again when she is better. I didn’t start nursing Eden until she was six weeks old. We managed to wean off the bottle and she breastfed for two years. Don’t give up hope and don’t beat yourself up if it doesn’t work. You and your baby have enough to worry about — feeding should be as stress free as possible.

3. Expect a fussy baby. This seems like an obvious observation, but there are other reasons besides wires that are making your baby fussy. Some infants are given a hormone called prostaglandin. All infants are born with a small hole in their heart that closes up after a few days. For children with the type of defect Eden had, the prostaglandin is given to keep that hole open, so enough oxygenated blood will get distributed throughout the body until the surgery corrects the problem. This hormone causes fever and irritability. Another reason for fussiness? Since there are so many procedures to be performed, infants with CHD cannot be swaddled, a common soothing technique. If you want to simulate that experience, try gently pressing in on either arm of your child with your hands. Subduing her limbs with a bit of pressure can simulate the feeling of being swaddled.

4. A spinal tap might be necessary prior to surgery. Most parents cringe when they hear the phrase “spinal tap” as it is associated with pain and trauma. Since your child is about to have open-heart surgery, doctors will want to ensure that your baby is healthy enough for the operation. A spinal tap is used to test for infection and meningitis, and is often standard procedure prior to major surgery.

5. Try to get some rest prior to “operation” day. The thought of leaving your baby in the PICU without you is hard to imagine, but you will be better able to help your child recover if you are rested. Find a friend or parent to stay with your baby overnight and go home and get some rest. You will want to have energy for those post-op recovery days. Your baby might be on a mild sedative like Ativan, and won’t be awake enough to miss you.

6. Expect ups and downs. Every day in the PICU is harrowing. Monitors beep the minute a vital sign dips below normal range, and you may find yourself going crazy watching all those numbers. Keep in mind that “normal” ranges are not applicable to your child. While a healthy newborn should have O2 of 95 or higher, babies with CHD’s have O2 levels in the high 70’s and 80’s. This is to be expected. The brain is the last organ to be deprived of oxygen so you should not worry about brain damage. In some cases, doctors want the O2 level to stay below normal so it doesn’t put extra pressure on a sick heart.

Advertisement - Continue Reading Below


7. Visitors will be limited. As is policy with most intensive care units, the ability to have visitors will be limited to family only. In the winter months, many hospitals will not even allow children under twelve due to the high instances of cold and flu. If you have other children at home who are unable to visit prior to the operation, bring home pictures and video of your little one so they can feel a part of the baby’s life.

8. Remind yourself that many congenital heart defects are correctable. As surgery approaches, practice deep breathing and meditation. Have others bring meals and do housework for you. Keep this fact in your head: Lots of children survive and thrive after heart surgery.

Eden is now seven years old and I go months forgetting she was born with such a severe defect. Those days may seem decades away, but it will happen; the trauma of pregnancy, birth, and a sick baby won’t last forever.

Comments

The Scary Mommy Community is built on support. If your comment doesn't add to the conversation in a positive or constructive way, please rethink submitting it. Basically? Don't be a dick, please.

  1. 1

    Mom2 says

    I am too a mother of a TGA baby,a little baby boy. terrible news a few hours post my CS but I am so lucky to live in a country with an amazing free health care plan and very talented doctors. my advice is to rest at home with close family during surgery,you can not do anything at the hospital. we also found help in talking to other parents in icu.our boy is now almost a year, doing very well:))

    Show Replies
  2. 2

    angel says

    My husband was born with a patent ductus arteriosus (meaning below) He had surgery not even a week after he was born to close it. His mom had him when she was about 7 months along and weight about 3 pounds He still has some problems like getting some chest pains but he is 30 years old and otherwise very healthy. I know it’s scary to have a baby so early but my husband is proof that with great doctors he has grown to be a wonderful man, father and husband.

    I hope your child is doing great and just know that they can still grow up to be what they what to be, my husband has been in the army for 11 years and is doing something he loves with my daughter and me by his side.

    I hope that as medicine gets better things will be better for babies born with issues so that they can grow up to be wonderful people. :)

    The ductus arteriosus (DA) is a normal blood vessel that connects two major arteries – the aorta and the pulmonary artery – that carry blood away from the heart in a developing fetus. The DA diverts blood away from the lungs, sending it directly to the body.

    The lungs are not used while a fetus is in the amniotic fluid because the baby gets oxygen directly from the mother’s placenta. When a newborn breathes and begins to use the lungs, the DA is no longer needed and usually closes during the first 2 days after birth.

    But when the DA fails to close, a condition called patent (meaning “open”) ductus arteriosus (PDA) results, in which oxygen-rich blood from the aorta is allowed to mix with oxygen-poor blood in the pulmonary artery. As a result, too much blood flows into the lungs, which puts a strain on the heart and increases blood pressure in the pulmonary arteries.

    Show Replies
  3. 4

    Andrea says

    I ended up having a super sick kiddo. There was no warning prior to his birth. There was a lot to deal with but the worst part was when he was transferred to a hospital across town. After 23 days in the NICU we got to take him home. One tip I would add is to have people bring you food. The cafe gets expensive and old. I didn’t leave the hospital for the first two weeks because family and friends brought us food and clean clothes. It was great to have the support we did. Nothing can prepare you to deal with what happens when you have a sick baby.

    Show Replies
  4. 6

    says

    I hadn’t realised you’d been through this Julie. I can relate to much of it, since although my second daughter didn’t have a CHD, she was born very premature, so we had months in hospital and all those wires and tubes. You are right that neonatal intensive care can be very confusing. I certainly felt that way too.

    Your first point about it taking 2 nurses to get your baby in your arms was very familiar to me, as was the breast-feeding issue – my daughter was tube-fed for over 2 months.

    It is such a scary time, and I’m so glad to see that your daughter is doing well now.

    Show Replies
  5. 11

    Lorraine says

    My son was born with Tricuspid Atresia and had to have 3 heart surgeries by the time he was 2 years old. He currently is 5 about to start kindergarten and has a fontan circulation. Currently he is doing well heart wise, which is great considering he is functioning with half a heart. I must say life is getting easier for us but the first 3 years of his life were nothing I could ever have been prepared for being told when I was pregnant with him that he would require 3 heart surgeries. My mom brought me lots of food when I was at the hospital, also make sure to contact child life services when in the hospital. CaringBridge.org was a big support me as well as other social networks, and look in to local support groups for families of children with congenital heart defects.

    Show Replies
  6. 12

    Megan says

    I was born with Transposition and I have recently had my first child, a beautiful, perfectly healthy baby girl. Life goes on after CHD. Know that she will grow up to be strong and be able to do anything she wants to. I admire my parents for going to the hospital so often in the first few months (my defect was corrected at 5 months), and for dealing with my constant screaming. They, and you, went through an unthinkable situation, and came out on the other side. The best thing you can do for her now is make sure she never thinks she’s not able to do something because of it. My parents never stopped me from pursuing my dreams in school, sports, and now in life. Yearly cardiologist visits are part of my life, but that’s not so bad considering babies born only a few years before me died in childhood from this defect. I’m 29 and happy.

    Show Replies

Load More Comments

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>