5 Things My Heart Baby Has Taught Me!

29th August 2015

I’ve thought long and hard about my great comeback post and to tell you the truth I haven’t got one… but what I have got is one of those ’5 things’ kind of posts.

In the past 4 weeks my life has taken unimaginable twists.  Things I would never have even considered have happened…


Rainbow (previously known as Baby Spot) arrived by emergency caesarean just over 3 weeks ago.  The following day she was diagnosed with a Congenital Heart Defect, more specifically a Ventricular Septal Defect (VSD). Life has changed and we’re still only starting out on the heart journey, but Rainbow is my special heart baby.

5 Things My Heart Baby Has Taught Me.

  1. Fear of losing a child is far greater than everything else – Rainbow’s life outside started with an emergency section. It was my biggest pregnancy fear… up until I felt that fear of losing my baby.  At that moment, I would have performed the caesarean on myself without any anaesthetic.  What had terrified me until that moment was the greatest option in the world.
  2. Expect the unexpected – Life with a heart baby will never be the same again. Admittedly a VSD (Ventricular Septal Defect) is one of the better CHD’s to have, but life will mean hospital visits, worry (more than normal) and extra vigilance.  Rainbow’s diagnosis happened within 2 hours of her baby check; a murmur was noted, an Echocardiogram was carried out and transitional care with NICU was started.  But…
  3. Everything could always be worse – Rainbow’s initial diagnosis was Tetralogy of Fallot. ToF is a far more complicated CHD that requires definite surgery within the first 12 months of life where there is an Atrial Septal Defect, Ventricular Septal Defect and a narrowing of the pulmonary artery.  A VSD only requires surgery if the baby is symptomatic.  Rainbow is exhibiting symptoms but hopefully will improve as time goes on.
  4. Be flexible with feeding – I knew this in the most part anyway… but my little heart baby is struggling with rapid breathing… I say struggling but I mean that in the loosest sense of the word. She doesn’t appear to struggle but the extra breaths per minute tire her out somewhat.  This makes feeding time a bit of a nightmare on occasions.  She can polish off 3oz in 10 minutes, or struggle with 1oz in 30 minutes.  I can’t feed her on the hoof… put it that way.
  5. Breastfeeding isn’t the be all and end all – I tied myself in knots trying to exclusively breastfeed with Comma… 12 hours after she was born, Rainbow still hadn’t latched on and, after a discussion with the midwife who admitted Rainbow wasn’t going to be a breastfeeder, I gave her a bottle of formula. I relaxed, Rainbow fed and all was okay.  It doesn’t mean I feel any less sad but I made the right decision for us.

Heart babies are special… they prove to the world that they are fighters.  They also prove that parents are stronger than can be imagined.  At the moment we are still coming to terms with the fact that Rainbow has a VSD and that she does have symptoms (the majority are asymptomatic) but we wouldn’t have been sent anything we can’t cope with!

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  • Reply
    6th September 2015 at 8:42 pm

    Oh she is beautiful, I hope she recovers quickly. I had an emergency C-section, it was terrifying, I’m with you there, major surgery and then your expected to get up and be a mum almost straight away. I hope everything goes well for all of you and thanks for sharing this I can’t imagine what you are going through!

    Take care xx

  • Reply
    Stella Kashmoney
    5th September 2015 at 12:41 pm

    Great post. Once a baby is born, life is never the safe again. Your baby is a cutie.

  • Reply
    Rhian Westbury
    31st August 2015 at 11:12 pm

    What an absolutely beautiful baby you have. You’re an incredibly strong person to be so open about what’s gone on and I hope everything goes well for both the baby and you. x

    • Reply
      5th September 2015 at 12:00 pm

      Thank you. She is an absolute stunner! She will have regular cardiology appointments to assess the hole and her medication but things are on the up!

  • Reply
    31st August 2015 at 10:35 pm

    A great post. She looks really cute. I hope she gets better soon x

    • Reply
      5th September 2015 at 11:58 am

      Thank you. It will be a long journey.

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