Initially we were diagnosed at the 20 week scan as having a girl (our first together) with suspect hypoplastic left heart syndrome. We went through the rollercoaster of emotions along the way, from fear, anger, frustration, guarded joy when she was born by induction at St Michael’s in Bristol, to abject despair and grief, through determination, fear again and finally being totally ecstatic and overjoyed.
Originally Millie, or “Mills” as we call her, was born weighing 4lb 15, and because of that the surgical team in Bristol were unable to pursue a surgical route as they just plain didn’t have the experience carrying out such a complex procedure on such a small baby.
Evelina’s in London was approached as they DID have the experience, and so at 5 days old, still on her Prostin, she was moved to a lovely PICU just across Westminster Bridge from Parliament. There they fought over the weekend to stabilise her as she’d taken a turn for the worse early Sunday morning, and at one point there were serious concerns on her even making it through the night. But she did, and two days later she was taken for a CT scan. It was then that the true nature of her heart defects became apparent, and they discovered no less than 6 defects;
congenitally corrected transposition of the great arteries,
partial anomolous pulmonary venous drainage,
double inlet outlet left ventricle,
hypoplastic and torturous aortic arch,
hypoplastic right ventricle and
tricuspid valve atresia.
We’d already put a DNR order in place after her first bounce back. Simply because she’d already stated to us that she was a fighter so if she went it would be because she’d had enough and was telling us she wanted to call it a day. But it came with conditions; if she was deteriorating and it could be sorted out with a little tweak of her current infusions then go ahead and do it. If however she had a full blown crash then they were not to attempt resuscitation. We didn’t want someone banging away and shocking her etc when she’d already clearly made her mind up. We carried her DNR on until her first surgery in Birmingham where we lifted it simply for the reason that no self respecting surgical team in the world is going to go into open heart surgery with a DNR in place. The DNR is a very personal thing but for us, seeing our little girl hooked up to all those machines keeping her alive, it was perhaps the one thing we felt we could do for her that perhaps gave her back some control over her own destiny, whether it be real or perceived.
There came that dreadful moment when we were taken to a private room off of PICU and as soon as that happens you know its bad news. For Mills, combined with her low birth weight it was the worst possible news. After a lot of explanation of her problems, normal procedures for corrective surgery, possible outcomes if surgery were pursued, it came down to the one simple fact that they didn’t feel there was anything they could realistically do for Mills and that they felt the kindest course of action for her would be to make her comfortable and offer palliative care. One of the phrases used by her consultant in that meeting was “Sometimes the hardest thing to do is the kindest.” It takes a moment for your brain to catch up when you’re told something like that and when it does it’s the worst possible feeling in the world. We became so lost in the depths of despair and we examined her options from every conceivable angle, and at one point we even instructed them to “withdraw treatment”. That was when we were reminded that we were entitled to a second opinion and we leapt on that out of sheer desperation.
Mills’ notes were couriered to Birmingham Children’s Hospital and apparently, off the record, their first response upon viewing her CT scan was “Oh.” My wife and I joked as to whether that was an “Oh ****”, or an “Oh, we can do something with that.”
BCH felt that they had a small window of opportunity and so Mills was blue lighted there from the centre of London in rush hour traffic by an incredible retrieval team and she had her first surgery the following evening and hasn’t looked back.
Another phrase that’s stuck with us through everything so far, and it’s been used independently by both London and Birmingham, is that “we’ve seen everything Millie has…we’ve just never seen it all in one baby.”
First surgery on 10th June was an atrial balloon septostomy and bi lateral pulmonary artery banding, which were done in an effort to stabilise her circulation and improve hemodynamics enough to give her chance to gain enough weight for her Norwood-type op. Up to the point where she had her Norwood+ (I call it a Norwood plus because of the variants), she remained on her Prostin, in all for a total of almost 2 months, that as despite understanding that they generally didn’t like to keep babies on it for much more than a week. It wasn’t until she hit 2.5kg that she started showing the first signs of destabilising; steadily lowering sats and bp, increased heart rate, visibly working harder to take breaths. Blood gases were being done and her lactate was showing elevation, meaning that she was starting to work harder. So the decision was made to proceed with her Norwood+ From our point of view on her surgeries we just resigned ourselves to the fact that they would either work or they wouldn’t. That may sound a bit cold but it was how we dealt with it, our defense mechanism if you will. Of course we were terrified, and both times they were the longest hours of our lives to date, and that was despite sleeping through them. We didn’t have the money to go galavanting around Birmingham, and there wasn’t a great deal else we really could do, plus we were dog tired from the late nights and early mornings with Mills. I guess our bodies knew what we needed better than we did ourselves.
And the joy at receiving the phone call to say Mills had pulled through surgery and was now in recovery is beyond description.
One of the other ways I dealt with it was by, in a way, finding God. I’m not a born again Christian by any means, but we did a LOT of praying, and in the end I don’t know if there was any divine intervention, but if there was then my hat is off to “the Man”.
Mills still requires more surgery in the future but for now we’re just all enjoying finally having her home after literally bouncing back from death’s door.
In order to help others try and make some sense out of things when they receive a diagnosis as devastating as being told your child has a congenital heart defect, or series of them, I’ve started work on both an online blog and also a video diary on You Tube of her journey, and if they help even one parent to understand and keep strong for their child, then they will have served their purpose.
9 Comments
hiya millie
hope all is well wit u, hope u enjoyed ur bathtime or spish spash as willow and i wud call it. did u av a jacuzzi lol w8 til u can av spish spash wit mummy, its really special, we do it all the time and dont bother wit baby bath anymore. i c my eldest daughter roxanne as looked in on u 2 c if ur ok, and she left a msg, also my friend corrie as looked in on u, altho not sure if corrie left u a msg. me n willow ad fun times 2day, last wk i got myself a new mobility scooter, much bigger than the 1 i ad b4 and this 1 can go out in the rain, back 2 the point, me n willow went 2 the shop on it 2day, she ad gr8 fun ridin on mummys special car and sitting on mummys lap, am pretty sure she messed wit the speed dial tho lol. av sent a msg 2 ur mummy on fb, altho not sure if she got it and am not goin 2 tell u wot it woz bout, we will av 2 w8 and c wot the outcome of that is. nice 2 c that 1 of ur friends as finally gone home, that will b u one day, u just av 2 b patient and w8 a lil longer, will b a magical day the day u do tho and am very sure that mummy and daddy will av sommets special lined up 4 u and that lots of ppl will b w8in there 4 u. keep fightin, ur a strong girl and u will show evry1 wot u really made of. cya soon xx
Good morning Ondre, I loved my bath was lovely and warm and it had lots of white popping stuff most of which went in my ears which was funny
Mummy told him off for being soft but you could tell she was over the moon as well. Daddy’s a little confused at “over the moon” because he said someone called NASA are the only ones to manage that. I had to correct him and point out the cow as well lol. Silly daddy.
Your new scooter sounds ace, what colour is it? Daddy says if I need a wheelchair when I’m older then he’s going to “pimp it” for me but mummy said no and they’ll get me one already pimped lol
Um…home..I’ve been home for a month now, its just that daddy hasn’t managed to add the “At Home” part to this blog, although I’m sure he does regular check in’s on facebook called “At Home With Mills”.
It WAS a magic day tho, daddy stood in the middle of the living room giving me cuddles and did the red-eyed thing and they leaked all over me
Back soon, have to help get brothers ready for school
hiya millie
sorry its bin so long av ad alot of my trouble wit my laptop, then my friend wiped it clean 4 me and i lost ur page, i cudnt reply 2 any posts on fb, i cudnt get msgs up and i cudnt load my games, when i finally got it sorted evrything woz runnin sooooooo slow. now its happened again so av got rid of the silly thing they call google chrome and now using internet explorer, i think the nice ppl that let me av internet av got alot 2 do wit it 2, i dont think there service is so nice, hopefully changin providers soon so that shud make a difference especially when u get roxanne filling her laptop full of films and music.
my new scooter is ‘champagne’ colour, a very apt colour 4 u i think. and like ur ops r givin u a new lease of life, my scooter has. im whizzing all ova the place now and willow loves bein on mummys knee on mummys special pushchair. are u goin to dress up for the scary nite (its not really scary, just lil children all dressed up and sometimes us grown ups do it 2), i bet ur mummy says that ur daddy is always lookin scary ha ha ha. i av bought willow a little witches dress from tesco for her to wear. we r goin 2 av such a fun decorated house, i av lots of halloween decorations which will b up and on saturday we are havin a party 4 willows very 1st birthday (which is the day afta scary nite), so will av balloons and banners up for willows birthday and party. it will look really funny scary stuff mixed wit lots of cute waybuloo stuff, i am sure u no who the piplings are. and if u tell mummy 2 make sure c beebies is on, on tues 1st nov, i av made willow a big card and sent it in to c beebies so that they can show it on the tv, hopefully they will as i woz a lil l8 sendin it. its a big card of willow and the piplings round a bonfire watching fireworks. fireworks r really nice sparkly things, some go bang (I dont mind them), in willows card the sparkly things spell out willows name and the number 1 for how old she will b. and its funny really coz my eldest boy damon, will b 23 on the 5th nov, which is bonfire and firework night, his and willows birthdays r so close. how r ur brothers and sisters being wit u, very gud i hope and hope ur brothers dont play 2 rough wit u and stop when u ask em, if they dont tell them u will play football wit their head ha ha
anyway am gonna sign off 4 now this as prob tired u out just readin this. take care and very very plzd wit ur progress. av just seen bout channel 5 interview, make sure u let me no when it will b on and i will defo watch. spk soon
love ondre xx
Hi Ondre, my apologies but as u’v probably seen on fb its not been my best couple of weeks, with lots of cyanotic episodes and even a rush amby lence ride to my local
All’s good though at the moment, just having a stress at everyone cos my brothers woke me up early this morning and I had jabs yesterday 
Did she have a good time on her birthday? I missed Cbeebies cos Ben kept stealing the remote 
))))))))
Ur new scooty sounds like a “blast”, would love to see u and Willow screaming about on it
Have to go now cos mummy’s taking me to see HER mummy who’s never met me (she’s quite poorly), Can’t wait
xxx
awwwww hope all is well and gud wit u at the moment, keep ya chin up and keep fightin which i no u will.
me and willow go evrywhere on my scooter, in town, tesco shoppin its fun. if i saw u i wud give u a lil ride 2 if ur mummy and daddy said it woz ok, ya neva no they may want a ride lol
yes she did av a very gud birthday, a fun party too. but c- beebies neva showed her card which i woz so annoyed at, all the time and effort i put in. but if you look thru my pics on fb, think mobile uploads then u will c the card. boys always steal remotes, my youngest boy does that when he comes to visit and hes 18 and roxanne does it too and shes 19.
hope you enjoy your visit to your mummy’s mummy (your nanna or grandma) and hope you have had alot of cuddles and fun. im going to watch this video now, looks as though you have bin stuffin your face. will leave a comment after.
take care xxx
oh yes you enjoyed that food didnt you
hiya,
well i av started catching up av clicked on each link on the rite, and worked my way down. am reading evrything lol from the beginning 2 the latest post. av done media exposure so will start on The bible 2moz. its very hard to take in how much a lil beautiful girl like urself, as gone thru so far. u seemed to av gone so far yet u still av a long way 2 go. must admit av missed r funny lil chats, i suppose we av both bin very busy. wud actually love 2 meet u in person, all these hugs i give u, i cud give u in reality and av a proper chat, will av 2 get willow 2 translate me thinx. well u keep bein strong, keep givin the world hope and makin ur mummy and daddy happy aswell as the rest of the gang. gonna do some painting now, unless u wud care 2 do it 4 me lol take care xxx
Hi Ondre!! Sorry it’s taken me a while to reply, it takes a lot of getting used to be back at home again after a protracted stay
I’ve actually been quite remiss in a few areas recently, something I’m hopin to be addressed soon
Will reply properly hopefully tomorrow night, daddy’s off to bed now as he ahs to be up early to catch a flight
Take care of you. Love and hugs xxxxx
gud mornin millie, yes av seen some pics that ur daddy as posted up of the school trip wit ur brother, all looks very gud. am sure u will pick up and b back on top of things soon, dont 4get u av ad alot 2 deal wit just lately, more than any of us deal wit in a lifetime, so dont make urself worse by worryin urself ova it. you just keep continuing 2 improve and keep smiling at the camera, like the beautiful little angel that u r, for us. we all love to c ur happy smiling face. reply when u can, dont worry 2 much, i can w8. love to you from me and willow xx