Raising a Child with disabilities: Story No.1
In mid-2012 came the news I felt like I'd been waiting for all my life - I was pregnant! I found out very early on. Our joy soon turned to sadness when we found out at 7 weeks that our baby had a very weak heartbeat and we were expected to miscarry. I was sent away and told to wait for "it" to happen. "It" didn't happen.
I was scanned again at ten weeks. The baby had a stronger heartbeat. My own heart fluttered with joy! But then came the news that it looked like it had a major abdominal defect. Again, we were told to go away and expect to miscarry. "It" didn't happen.
Back for more scans. The baby was growing! We were ecstatic! Doctors hoped that the abdominal defect would correct itself and we were to go back at 16 weeks. At the 16 week scan, the Doctors found that the defect hadn't corrected itself. In fact it had got worse - a lot worse. We were advised to consider termination. We refused. We wanted to give this baby a chance. From this point forward we were to have weekly scans. At 20 weeks, the Doctors confirmed that no other defects were found. Brilliant news! But, the abdominal defect was getting worse. The Doctors didn't know if they would be able to repair it straight away (as they usually would with this type of defect), but had come up with a plan to manage it and for the first time in the pregnancy I finally felt like things were looking up a bit.
Then came the biggest blow. At 23 weeks a major heart defect was found - actually not one heart defect but four. Each defect could be surgically repaired (not totally fixed but enough so to give her a relatively good functioning heart). But this on top of the abdominal defect meant that the baby's chance of survival was minuscule. We were urged to terminate.
Every bone in my body was telling me that termination was the wrong decision. Our baby had repeatedly been expected not to survive from the moment we had an early scan at 7 weeks. She defied the odds up to now so I wasn't about to give up on her. Despite doctors advice, we carried on. From 27 weeks it looked like she was ready to enter the world but we had to keep her in. She wouldn't survive, we needed for to get to 37 weeks at least. Even with delivering at 37 weeks she was given almost no chance of survival by the doctors. So I was on complete bed rest. Sounds lovely doesn't it, spending all day in bed? In reality it was hell!
Plans were put in place to deliver her by c-section at 37+6. But my little lady plays by her own rules, and decided she would like to come at 37+5. It was a Sunday, it was 4am and nobody was ready for her to come! We had to drag a whole team of experts out of bed ready to deliver her. She arrived in spectacular fashion. The delivery was traumatic yet I was strangely calm. I remember trying to push all of the worrying thoughts to the back of my mind and just focus - would I hear her cry? Would they let me kiss her before taking her off to NICU? Could I hold her, just for a few seconds? I wasn't able to hold her, she had to be whisked off immediately.
I didn't enjoy my pregnancy - there was no baby shower, no shopping for baby things, no NCT groups. Just lots of tests and scans and people questioning my ethics for keeping a baby with major medical issues. I also missed out on all the exciting "mummy" things that we sometimes take for granted - I couldn't breast feed; I couldn't attend mother and toddler groups; I couldn't even hold my baby, but none of that really mattered. She was here and that's what was important.
I was told I couldn't see her for at least six hours while I recovered a bit from the c-section. I didn't know if she had six hours, I needed to be with her. I was in a pretty bad way after the c-section but an hour or so after the operation, and still numb from the boobs down, my husband heroically scooped me up and bundled me into a wheelchair and we snuck out of the ward and down to NICU! Followed quickly by two very cross midwives, but I wasn't budging.
I spent all day every day in the neonatal unit. We were allowed to sleep on the ward for a week and were then told that we needed to go home. I remember thinking, what? Without the baby? Are you mad?! Although being on the ward was torture (I was surrounded by women with their beautiful newborn babies whilst mine was fighting for her life in another part of the hospital), going home would be far worse. Nurses soon discovered that we weren't actually going home, we were taking it in turns to sleep in the car. Home was too far. My body literally ached to be by her side. After a couple of months we were offered a room in the hospital accommodation as nurses were concerned with my lack of recovery after the c-section. They were right - of course - I didn't recover, and I still have post c-section pain and other issues now. If you make me laugh too much I will almost definitely wet myself!!! But pelvic floor exercises and pain relief weren't my priority at the time.
We called hospital 'home' for the year that my little lady fought for her life and we are frequent visitors since. I can only describe being in hospital for that length of time as "living in a giant bubble". You see and hear things you wouldn't wish on anyone. You suddenly have no idea what is happening in the outside world, and you rely on people for things you've never needed before, anyone who will help! Clothes, food, toiletries, someone to take care of the house, an ear to listen, a shoulder to cry on.
When a child becomes critically ill and a family is brought in to say their goodbyes, your heart breaks for the parents of the child. Yet you also feel a sense of relief that it wasn't you in that position. I battled guilt over this for a long time. But each parent is the same. Each parent will be relieved that it is not them saying goodbye, and equally heartbroken for the family. However, on two separate occasions it was us, they told us "nothing more can be done". Miraculously our little lady fought through the odds on both occasions. Following a number of surgeries, infections, meningitis, and septicaemia, Doctors told us that she may be brain damaged, she may never talk or eat, and she almost certainly wouldn't sit or walk - "we will take it" we said. "All of it". As long as she was happy, we will deal with all of her needs. We just want her to be happy. And she is! She is the happiest (almost) five year old in the world. She talks (a lot), sits, walks and eats! And her brain is sharper than most children of her age! She's growing, hitting all of her milestones, and starting school. She has issues and needs lots of care and attention, but her issues are nowhere near as profound as the Doctors predicted. Miracles definitely do happen, and I have one to prove it.