Wednesday, 13 May 2015

Heni's Story - Part 2

  It's a good job that Heni had those three extra weeks inside of me to be nourished and grow a bit more. I think the fact that she weighed a hefty 5 lb on her arrival meant that she had at least a fighting chance to survive. Sadly, most of the babies with Edward who are born alive are much smaller and fail to thrive. Over the first number of months she lost a considerable amount of weight as feeding was extremely difficult for her. She found it virtually impossible to suck because of the very high palate in her mouth...when she finally did get enough milk she would throw it all back up again and thus the cycle of "express, feed, vomit" was established. Hour and hours and hours of it.

Exhausted after a feeding session. ...sporting a new look with her bib on her head.

Feeding was a hugely time intensive and stressful endeavor... one which exhausted everyone involved. However, gradually with the help of a special feeding bottle and then with unconventional methods  that the Speech therapist disapproved of, she started to take on board more fluids. Because feeding was so difficult and time consuming, as she got a little older it was suggested to us that perhaps we should go down the gastrostomy route as it would make feeding a  lot easier for us and for her.  We considered the option but felt that we should persist with oral feeding with small amounts of pureed food on a spoon. We wanted to give her a fighting chance of trying to eat "normally"... something that would be potentially good for her development and for her quality of life.  She kept solid food down much better that fluids (which she still threw up a lot of the time).....and although she started to grow, it was VERY slow. People would come up to me when she was six months old and ask me if she was premature and my typical response would be "no she was three weeks late!"
She looked like a sweet little pixie with very "elf-en" features and low set ears. To this day I still joke with her about being one of Santa's helpers or getting a part in the Hobbit.

Wearing premature baby clothes
  Another one of Heni's main problems for a lot of years was her sleep (or lack of it).  She struggled to get any....or should I say struggled to get any at NIGHT...because she slept a lot during the day because of how tired she was after feeding. Some of the time she struggled to breath because of how tiny her nostril were, other times it would be because she was susceptible to coughs and colds and she would have difficulty lying down, needing to be propped over a shoulder or tummy down over a knee. A lot of the time she just didn't want to sleep.... her natural circadian rhythms seemed to be non existent! To this day she still likes to pull an "all nighter" and party away with her soft toy friends and you can hear her giggling and chatting away having a hoot of a time.... so much more happy than she was back then!

Heni's main problem was that she was born with a heart defect... a "Ventricular Septal defect" to be precise, and during the first year we were in the situation where on numerous times we thought it would be her last night. She went in and out of heart failure, blowing up like a balloon and carrying a lot of fluid. It was then that she went on a bunch of heart medications. 
We were offered the opportunity from Harefield Hospital to have this corrected and so we began the process of telephoning other parents whose children with Edwards syndrome had undergone the same operation to do some research on the outcomes. Unfortunately the parents we spoke to no longer had their children with them and so we decided that we would forgo the op and enjoy her for as long as we could. We were extremely grateful that our Peadiatric Cardiac Consultant allowed us to make that decision  for ourselves whereas I have heard since at some other hospitals, consultants have denied parents of that precious choice.  

Heni and big brother Tom

On numerous occasions we felt and were told by doctors that maybe her time with us was coming to a close and that we would lose or little girl. Miraculously, time after time she would pull through her dips in and out of heart failure and bounce back, eventually reaching a point where her heart stabilized and she no longer needed the medications. Each time we would go on the emotional roller coaster ride with her and breath a sigh of relief as she pulled through.  
 At the close of the year we began to feel a little more comfortable that this is what life was going to be like and made the occasional venture out of our bubble.... We went on our first major  "day out" to Legoland as a family, with her big brother.  By the time she reached her first birthday we decided to mark the occasion with a party and celebrate her achievement (and ours) of making it though what seemed like an endless battle of trying to stay alive.... 
She was still a tiny little munchkin and fitted in to an outfit on her first birthday that her sister wore years later when she was 12 weeks old!

Heni aged one at her birthday party.

She had made it through her first year to become a small percentage statistic (she was one of the 8% of the.... 2.3% per 10,000  babies who are born alive) She had become one of the little miracles who for some reason  are meant to stay around a bit longer than others.
Her lungs however had become progressively more damaged by the pressure from her heart and she had became more susceptible to chest infections and as she started to slowly grow so did the curve in her spine....

Join me for part 3 soon.


Part 1 of Heni's story can  now be viewed here
Part 3 of Heni's story can  now be viewed here


  1. As I am reading your posts...I just keep! Thank you so much for sharing your family :)

  2. Soy de Argentina.. Me encantaría contactar me con usted. 011 1536790872. Mi bebe tiene un mes se llama Eva ella tiene t18 . es bella como tu hijita. Un abrazo!

  3. Hola Adriana muchas gracias por tu palabras!
    I am learning Spanish but I'm not very good at it yet! Es muy limitado . I am sorry that I can't call you on the phone but please feel free to email me with any questions or concerns. I am happy to help or just listen. Un abrazo para usted x


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