Congenital heart defect in one twin. Our story.

open heart surgery in twins

Author:  Shannon Foster

My twin pregnancy and journey has been a Rollercoaster from the start. From the shock of finding out it was 2 babies instead of 1, to going to my 18 week ultrasound and finding out that Twin A had some sort of congenital heart defect (CHD).

32 weeks pregnant with twins

At the 32 week scan it was confirmed that she had a Ventricular Septal Defect (VSD) and pulmonary atresia which would require open heart surgery. We were informed that she would be staying in NICU on medication to keep her valve open long enough for her to grow big enough to have surgery.  

Note: For a full guide to NICU terms please see our guide HERE.

congenital heart defect twins

My twin birth story

So fast forward to the girls birth.  I went into labor 3 days before my elective c section was booked. So it became an emergency c section. 

Tatum Leora was born at 8.38am weighing 2.55kg and Arabella Eva was born at 8.39am weighing 2.21kg. I got a glimpse of both of them, before they were whisked away.

Arabella went straight to NICU and I didn’t get to see her again till the next day. Tatum was on oxygen for a few minutes then came through to me in recovery. 

congenital heart defect in twins

Twin A, Arabella, had her first surgery at 3 hours old

My amazing husband Mark went backwards and forward between both girls and me all day. Arabella also had something called duodenum atresia, which is basically where her bowls were not attached to her intestines. They operated to repair that when she was just 3 hours old.

Whilst in surgery they also discovered that she has gut malrotation, so some of her insides are on the wrong side. They decided to remove her appendix so that she wouldn’t be misdiagnosed if she ever had appendicitis.

In doing some ultrasounds, we were then told that she had polysplenia… multiple small spleens. They do not function as a normal spleen does, so she now has extra vaccines to protect her from possible infections. 

Taking only one twin home from hospital

Taking only one twin home from hospital, due to a congenital heart defect in one twin

I went home with Tatum after spending 5 days in hospital and had to leave Arabella in NICU. 

We went in every 2nd day and I spent as much time as I could with her whilst trying to still be there for my 7 year old and my newborn that was home with me. It was a crazy time and I never really had that snuggle time with my baby and just being home and getting into routine like I did with my firstborn. 

leaving one twin in hospital

Bringing home one twin on nasal gastric tube feeds

Arabella spent 6 weeks at the Mater NICU before telling us that she was ready to have surgery. She was then transferred to Lady Cilento children’s hospital, which is now known as Queensland Childrens hospital.  She had her surgery on a Tuesday and recovered really well.

However, she would not feed very well from a bottle. She had had a NG tube in since NICU and by week 3 I was told that that she would be coming home on tube feeds.

That was a massive shock and I suddenly had to learn all about changing and reinserting the tube, checking pH levels and attaching the tube to her face by tape. I then had to teach my husband as he generally had to help me as its pretty much a 2 person job. 

Weaning from the NG tube

Arabella eventually learned to take more and more milk from a bottle. At the age of 5 months, we went on holiday to the beach for a few days with family.

On our last day, as we were about to leave for home, Arabella pulled her tube out. All our supplies were packed away in the trailer. So as she didn’t need a bottle for several hours we decided to leave it out. She took her next bottle with no problems and we have never looked back.

The dieticians were happy with her progress and she has never had to be on an NG tube at home again. 

Heart Surgery

The surgery they did at 6 weeks on Arabella was a short term solution. Her longer-term fix (3-5 years) was scheduled for 6th September this year.

pulmonary atresia in twins

She had her VSD repaired and a conduit placed from the main pulmonary artery to connect to the 2 smaller arteries. She had just started walking 2 weeks prior to surgery and unfortunately lost all her core strength and had to do all that learning again.

CHD surgery at three hours old

Recovery from surgery for a congenital heart defect in one twin

We had a few setbacks with her recovery this time but 2 and a half weeks later she was home. She has since started walking and is doing pretty much everything her twin sister is doing. 

At her recent post op check up they saw that the pressure coming through from the conduit to the smaller pulmonary arteries is not great. They are still very small and are not growing as they hoped. Her right side of her heart is enlarged due to the pressure. So the consensus is to go in via the groin and insert a balloon or stent to try and help stretch and grow her arteries. We are waiting to hear when the date for that will be.  

Reflection on our twin journey so far with a congenital heart defect in one twin.

It has been a crazy ride having twins, including a congenital heart defect in one twin. I had never really understood what CHD was until I went on this journey with Arabella. I am so grateful that Tatum is well and such a happy child. She is our clown and keeps us all laughing despite how hard things may be at the time. 

CHD in twins

I have also had a village of people from our church and our family who surrounded us in those early months, providing food, baby sitting and emotional support. I would never have made it through to now without all of them.

This has been one of the hardest roads I have walked in my life thus far, but I have both my beautiful girls with me today and my family is complete.

My hands may be full but so is my heart. 

Ventricular Septal Defect in twins

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