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Born With Holes in The Heart

I started thinking about what we went through when Little Madam was born in a trance like state yesterday, after we went for our appointment at the hospital with her and were finally discharged from the pediatric cardiology department for her holes in the heart.

When the twins were born in their very speedy delivery (I have written about my race car style birth story before) my obvious first concerns were if they were if they were fit and healthy. They came in at great weights of 5lb 4oz and 5lb 14.5oz. Chilled out boy was finally given the all clear that he did not have Down’s Syndrome (it had been a very traumatic pregnancy with waiting to know due to our very high risk factor, topped off by excessive hyperemesis!).

So we were promptly shooed up to the ward, babes in arms and there we stayed for two days, as is common practice for twin birth.

We were discharged at the earliest time possible as I was determined to get back to BBwho was only 15 months and who as luck would typically have it, was poorly with a sickness bug for the first time.

I don’t think now, looking back that Little Madam had really got to grip with feeding. I had decided with the twins that I would bottle feed but she was taking between 10-20ml per feed. I was discharged on the Thursday and by the Saturday she was getting more and more sleepy and limp. The midwife who came to visit me that day said that I should ring if she had taken any less than 40mls for the rest of the day. I didn’t get any in her. She lied limp in my arms; this tiny fragile doll of a baby and even pinching her cheeks (which I was told to do) would not rouse her!

We rang the midwife and were told to go straight to hospital. It was the most horrific time. My baby was 4 days old and we were back in hospital with her being a failure to thrive, but not only that I had to leave my other newborn baby at home without me. I had hit that baby blue stage and was an emotional wreck anyway and now they were trying to draw blood from the tiny arm of my baby girl and put up a drip. They put a cannula in that was the size of her arm and had to then splint her arm up to hold it in place.  Both my husband and I were shaking in tears and it was our longest night of fear to date.

To give you some scale of her size the day we brought them home from the ward, we took a photo of them against two dolls and they were smaller than the dolls. They were in premature baby clothes and their legs still didn’t fill to the bottom.

Born with holes in the heart

Two days before we were back in hospital - aged 2 days

Luckily for us that night, the best consultant Pediatrician was on duty. After a thorough examination he said ‘Are you aware you daughter has a hole in her heart? Well in fact she has two and a very strong heart murmur as a result.’

We had no idea. Of course the twins had been examined on the ward but this had not been picked up. He went on to tell us that it would be one of the contributory factors to her not feeding. He told us that the process of feeding for a baby required a lot of energy, however they replenish this with their intake of milk. In Little Madam’s case, her heart was putting her under stress and having to work harder so she didn’t have the energy to feed and then therefore was not able to take in any energy from any milk as it was not going in.

They debated tube feeding her, but the amazing nurse on duty that night said she would stay with me and try to keep feeding her with the bottle. She was so patient, but it was painful trying to watch her get some life out of my tiny little girl to feed, when all she wanted to do was sleep.

I had to wake her up every two hours and force her to feed. Sometimes this would work and other times not at all. The doctors were determined that she takes a set amount during the course of the day. She was failing miserably. I was an emotional wreck. This dot of a baby in a giant metal medical cot beside me, all alone because my Mum had the other twin and BBand my husband had to be at work as he had just started a new job and it was all very difficult.

She would always do two rubbish feeds, at which the doctors would say’ if she feeds like that next on the next feed, we are putting a tube in.’ It was like she heard, because the next feed she would take a huge bottle (when I say huge I mean 30mls – whoo hoo!).

By day three she started picking up. On a couple of feeds in the day she even appeared to be waking herself for them. Finally one nurse noticed that she was taking the daily requirement, just not at the consistent 20mls per bottle they were after, it was a little less here but a bit more there.

On day five we were allowed to go home. However we were now under the cardiology team, which would mean she would need to be seen monthly to have heart scans.

She had two holes – one between the septum in the atriums which are the top two chambers of the heart (ASD) and one between the ventricles which are the two lower chambers (VSD).

The ASD closed fairly quickly. Apparently this type of hole is very common, especially in premature babies. It was the ventricular hole that they were most concerned about, and informed us that if it did not close by her first birthday may require surgery.

Luckily for us, that hole was getting smaller by her first birthday so they gave her some time leeway and it is now fully healed.

She is chesty. Whether this is linked or not we don’t know, but upon her discharge from cardiology she has been referred to the asthma clinic so we can get a preventative inhaler pump for her as they don’t want her using the ventalin pump any longer.

At two and half now, my Little Madam, is still dinky, but the most feisty, independent and strong-willed little girl. It seems strange to ever consider her frail and weak and vulnerable. Yet as soon as I remember the tiny splint on her arm holding in the drip I remember with that sick, deep pitted feeling you get, and I know I never want to experience that feeling of helplessness and fear again.





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14 comments to Born With Holes in The Heart

  • what a worrying time you all had. My daughter was 4 weeks old when admitted back to hospital as she was failing to thrive ( well she had lost half her birth weight and my GP still insisted nothing was wrong)
    I hated what they did to her and every instinct says take her away and dont let them hurt her, but I was that exhausted and in that reapect I just didnt care.(sounds terrible)
    She eventually got dismissed from her paediatrician a month after her 13th birthday and what a great day that was.
    good luck with the inhalers

  • aaahhh what a horrible time for you all! When Rosie was a few weeks old we were told she had a heart mumour and that was scary enough. By the time she was seen at the hospital had cleared up and we were told she was fine. Glad all is ok now and that you have three healthy, happy children xx

  • Aww :( What a horrible thing to go through. You poor things! How wonderful it is that everything turned out ok. :) Lovely post. Thank you for sharing. Debs

  • oh Kerry, it sounds so traumatic. I cannot imagine how hard it must have been for you.

    I’m so glad everything worked out so well. You have a very strong little girl there.


  • That photo with the dolls is amazing. I didn’t realise you went through this Kerry, it must have been terrifying. Although nothing as serious as a hole in the heart, I had a terrifying scare with Mads when she was a week old and she had to have a lumbar puncture and go on a constant antibiotic drip with her little arm all encased in bandages to stop her pulling it off. I will never ever forget that for as long as I live.

    We are very lucky to have beautiful, healthy children. That truly is a blessing.

  • oh my that must have been such a scary experience for you! I am so glad she pulled through and you should be proud of yourself too it sounds like you coped very well under the circumstances xxx

  • Oh wow, what a scary time for you. So good to hear that Little Madam has been discharged from the cardiology clinic now :) Both my babies had to spend some time in the SCBU immediately after they were born and it is horrible seeing such a tiny baby with a huge splint to hold the drip into their arm and masses of tape to hold the oxygen tubes in the correct place.

  • Such a worrying time. Always hard when things are wrong or illness. Hugs xx

  • MommyoftI&K

    Glad you daughter is discharged. My twins (born 12-2009) were very similar. One twin was hear healthy (my daughter) and one twin with a complex congenital heart defect (Tetrology of Fallot and pulmonary atresia). My son had an open heart surgery at 5 days old. I am so happy that your daughter idn’t require surgery, but you as a parent will alway know the heartache of living in the “CHD World”. God Bless!

    • Thank you. It was tough at the time, but we are so grateful she is fully healthy now. You must be amazing to have coped with heart surgery. I am not sure i could have been that strong. God bless to and your twins. (Only a couple of months younger than mine!)

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