Giving Birth To A Girl With A Rare Disease | Children's Hospital | Real Families with Foxy Games

[Music] every second week I was getting scanned this is I wouldn't carry her full-term she probably passed away soon after birth I'm just drain and not know I'm just gonna live sure on a day the family we're not expecting a lot another opinion saying no point in doing any major surgery here that's all mine actually gonna believe in her and give her what she deserves when she was so sick and so low when she got better then it's like she was never zoned she bunks in the back megan has always been very determined to recover after each procedure [Music] it's less than a year since we first met Megan and her parents we were unsure as to whether she would even survive infancy this has gone beyond a short-term survival she's American with old OSHA's America [Music] [Music] just with drain and not normal I was coming up not knowing why she was going to be like not normal she's gonna live she wanted a that was worse part of not knowing someone says look this is gonna happen this is gonna happen that's that's not the wait let's go you just had you had to deal with the during the scan and the rehearsal later said the babies had this measure and big four days and nothing to worry about just come back into extreme we'll do more and more detailed scan so the doctor was there and the doctor I have to go 45 minutes standing the doctor said look the baby we have a very large cleft and the brain is not forming as I said the brother is very little brain - showing the brain and there's fluid were shouldn't be and just a lot of bad news anyway I said in late 2009 medical teams expressed concern in relation to the health of Janice's unborn baby the diagnosis looked grim for her development and survival we every second we thought we were I was getting scanned and it was knocking I need the brain wasn't growing at all a lot they said I probably wouldn't wish I wouldn't carry her full-term and she probably passed away soon after birth mentally I sports of can engage by RJ's good days you some days I was doing probably couldn't go to bed some days it's almost surreal at the time so I think both off you two and just focus on her at the best we could we explained that the baby was gonna have a cleft in we showed her pictures from the internet of kids with classes and stuff tangled first off is she's one that kept myself from day ever gone yeah or to the months what are you givin in Bobby blueprint she was due in March 2010 was in February and the 11th February I was brought in for a c-section not knowing what's gonna happen and just very anxious very nervous frightened everything and every emotion during the zones not not a cylinder in the room but the doctors are after asked us before I look at you John to see her straightaway but over the cleft they were telling me that's the cleft salsa very said look before I hand over saying no look let her go over take a picture and then show me for them weight diminished she came out there is a career over bring a role for us - she's beautiful - no she was gorgeous [Music] woman which was very very weak and she's not a straightaway then but I saw you Kappa she was she was an hour old and she got baptized and it just went Sanada or she's getting stronger and stronger so she was left with us for a while in our arms but when she says she showed signs that she was getting hungry said look take her to the kneel and warm put her into the incubator and see how she goes and we give her we feed or a bottle our will we didn't think she would feed about and then but then fed through the tube I dunno I think anyone in those shoes which is carry on as normal so yes to do even we took a whole no and we just treated like we treated Sophie there was no public eye for anything we just said look she's hairy no would to know we carry on as best as we can with her and keep things normal [Music] it's Christmas morning Merry Christmas okay well enough about a moment daddy I found in the tree they've [Music] returning home after her birth each day was a welcome surprise for Megan's family [Music] when she was so sick and so low when she got better then it's like she was never zone she bumped to the back and Josh's fully laced and again and used to say oh my god like ho ho lo like hope sick she gets and where she she recovers so fast then now I never gave up and I said no she she is gonna push off she will with continued uncertainty surrounding her health and only a few weeks old the family received more news for the first time there were glimpses of light in their daughter's future [Music] the first time we went up to temperatures in hospital when we met em dr. McClure Lee he sat down with us and he just observed Megan he's just looked at her in her buggy and what was written on paper about Megan and while he's seen what Megan was like two different two different things my dad was there David was there I never said I believe that's like just stuff someone actually gone ahead bone believed in her and to know and just give her what she deserves in life non that was started with him but him Lois when that changed then it was like total change over and brilliant a year and a half later Megan and family were back at Temple Street to meet various members of the multidisciplinary team investigating the next steps in Megan's journey the family when we saw them first the family definitely were not expecting a lot they were expecting another opinion saying that there really is no point in doing any major surgery here she was communicating in her own way and she actually had quite a lively little personality of her own certainly I could see that this is not a child that is so compromised that they're not reacting with what's around them since her birth megan has undergone a number of surgeries following shots which were inserted to drain fluid from around her brain plastic surgeon consultant Michael early guided Nagin through two major operations to repair her cleft the first thing that was done once she was born was after she had the shunts put in and her head stopped expanding well then she was beginning to show signs of improvement so when I saw her she was at a stage of having had the advantage of a little bit of growth and the effect of the shots which had helped greatly we began looking very carefully at the features of what was wrong with her and essentially she appeared to have very definite facial cleft in and a craniofacial deformity known as hyper terrorism with her eyes being too far apart Megan at that stage was quite strange looking quite frightening looking to people who would not know anything about what a facial cleft looked like her whole mid face was wide open her nose looked in the wrong place her head was larger than normal she looked very strange indeed if she's moving or playing would she kind of somebody called her name would she stop and turn brilliant Megan's progression has been dramatic and a new journey was about to begin as the team investigate the possibility of one of the most invasive surgeries on Megan two days after the lip repair and the facial cleft repair and the palate repair all done in the first two operations the next plan is to protect her eyes primarily and to improve the appearance of her cranium just the upper skull shape and around the eyes the critical thing about this is to stop the eyes drying out stop the cornea becoming dry and scarred and eventually maybe even cause blindness Megan's cranial region was now an important concern continually impacting on her daily life and development [Music] every aspect of Meghan's care was being looked after this doesn't last and last and it's not being checked out and it's brilliant that everything is happening a parrot-like she will be sedated until tomorrow and she will be safely and even the tough that a lot of tomorrow's can kind of scary enough and but I know that when she called like it's more information for the doctors and they know more and it will help with the operations that are down her head so it's a good name positive enough about it like I would like I enjoy them too much and what's gonna happen tomorrow just the fact that a hosta needs to be done in and it helps make it in every way and she don't carry one good the way we look at things in life to know she she's she changed all our lives really for the better when we see her like it's truly she had this joking but when you see how good she is and she said you know she make us feel that we can wake up and do things every day and not as well too much time and the higher teams you know cause she pulls through so we she leads us you know if she needs us truce yes cuz you're beautiful you are the beautiful girl after research the one with fear with their all to know what no she's after be true enough but then you see how high she gets then we say we're getting ready for the next step that you know she paints but she's fabulous it is thinking about know what his heart but him every day is she's just happy to be here and we're happy that she's Harewood yeah she's the best guard Pusha piggy-wiggy richer piggy-wiggy the initial months of Megan's life were filled with a number of surgical procedures and hospital visits the the first closure of the lip was a major procedure because it isn't enough just to close the lip defect alone we had to close the full cleft right up to the eyes as well the second operation that Megan had was the cleft palate repair and we managed to do that about between three and four months after the first major surgery and that surprised me that she was so well able for it as each procedure you're changing the anatomy that megan has grown used to she has to relearn her new anatomy after each procedure and that's really one of the problems that she would face her parents then have to face the change in Megan's appearance the next big problem was her overall appearance and very strange head shape and the fact that her eyes were almost permanently held open in a very wide staring way and that had to be addressed attending the hospital for further scans helped the team monitor Megan's progress after previous surgeries and let them know if they could proceed further with an as yet uncertain third operation within the coming weeks there was a thorough Gemma another one in June and so this one it would be quite soon it's just when they all the doctors get together and see what's happening get a plan together [Music] don't think about it too much I think she's only think about Olaf gonna happen it's just thing that every we get on things and I can't it the last minute like things are organized took my pen just make sure she has days at work her sister because obviously we have to be fresh spy even she has to stay a dumb blonde car Meghan's case continues to be of a particularly complex nature and her vision was now part of a number of important concerns consultants dylan murray john caird and michael early took a cross-disciplinary approach in planning the next steps of Megan's hospital treatment Megan has had her 3d CT stand today and what I would like to know is how we can improve the shape around the front walk short region here first from your surgical point of view if she has shots as we were in looking at around at the back knee and from a craniofacial point of view she needs remodeling of the area around the front of orbits the next plan would be to do this what would be called a major craniofacial procedure difficult thing for the parents to face because they have seen Megan go through two major surgeries already and seen her run into airway difficulties after the second one and here they are being faced with a further major procedure the position of the forehead is somewhat protrude so we need to advance that area yeah right forward because the forehead bone and the way in which the muscles of the eye are attached to that bone and the inside of the orbital cavity which is a circle of the eye she's not able to close her eyes fully and this of course can cause problems with scarring of the cornea which is the outer layer of the eye and ultimately that has the potential to cause blindness in essence my involvement here is in relation to the shape of her her skull and the condition that she has known as craniosynostosis we would have undertaken 3d CT scans and MRIs to try and help us to plan in the first instance to plan the surgery but also to alert us to any other issues that may impact on how we do the surgery Meghan's case is quite unique and given the very significant issues that she has you know I think all the other sutures I mean even just display my temporal suture there that lambda is they're all open one of the concerning issues in relation to having a diagnosis of cranial synostosis is that the skull just grow at a normal rate and as a result the the brain doesn't have the room to grow and that can cause raised intracranial pressure which is something that can affect the development of the brain and you'd be taking bone graft from the back and raised around as required yeah when you're dealing with somebody as complex as Megan you've got to start with the most critical things and then you start with the airway making sure that she's able to breathe vision is incredibly important obviously and you've got to make sure that she doesn't develop any any scarring of the cornea and then things like feeding and her intellectual function so these all these issues take precedence over any cosmetic issues that might be involved although you know and given the nature of the surgery that we do this is something that we obviously take into account when we're when we're planning surgery what it is going to involve is an incision across the top of the head exposure of the skull bones and the orbital areas from above and then to take out all of that tissue the bones and rearrange them and put them back in again in the right way she really couldn't be in a better condition for this so I personally would like to get as much done why she's young okay as possible she will no doubt lead many operations in the long term future but certainly to get this laughs bigger done because sir that means she'll ever have the lift on the pallet done and then the farag remodeled and so it'll be sooner rather than later hmm so we put probably happy Oaks that everything is done and we know the next step and so when I rather than a table where we have feet brilliant pretty loose right the ball is rolling again for the next one [Music] no reverse elbow tomorrow very nervous scared for her brushes she's grande she does north ahead of her thought she'd been already sick she was actually catching the measles she has him tore infections ear infections new name I know she liked picking it up she's back to us I've know again she's very well-written ready for tomorrow [Music] came on us too fast all together too fast she's in good health than us so she's ready for it and hopefully everything goes to plan [Music] more afraid to us no then then herself she don't know what's ahead of her was like she knows the face she look at harder and I say I know this place I'm backing in he backing in yeah didn't sleep last nice it was like she knew what was going on she was whinging and crying and looking for her battles during the night but she never does dave was tossing and turning our Nate and I've been down and just maimings remain was my own really thinking about why she won't but she's going to go through just to worry when when you're handing her over there I know when walking up the door and that's gone with Harrods parrot [Music] [Music] it's Megan anomaly husband number four a four two zero nine date of birth three Elevens takeaways for sex no and try not to think about what happens when he wrote later on to see more later yeah yeah I had to buy blow kisses [Music] [Music] didn't sleep so much on and off as along makes it's good know they were going to orally and get young kids get any good already start yeah Oh is he tired [Music] just say go by herself knowing sure not super awesome intro it's gonna be long day [Music] I'm Catholic you will not [Music] the most important thing that's happened since we last saw Megan all together was the fact that she's grown she's got bigger she's stronger and the object of this operation is to protect your eyes we move forward the supraorbital area protecting the eyes in a better way and gives them more normal shape to the Florida throughout the day what we'll be doing is would be first of all exposing the bones and then mobilizing the bones that will be the craniofacial surgeon mr. Murray with the neurosurgeon the three of us will discuss about modeling the frontal orbital Ridge into the shape we want it to be risks of plenty of facial surgery are anything ranging from minor to very severe when a surgeon says very severe it means usually there is a very very small chance of mortality it is an advanced form of operation and so there is there's quite a lot of risk you do try to stay outside the coverings of the brain which means that the meninges are kept intact and therefore the brain is safe she's through all the major stuff once we get this time as a concern here that her brain won't develop properly if you don't allow that skull to expand fully the plan today is to advance the forehead forward by essentially taking it off reshaping it into what would be considered a normal form where we can release the fusion of the skull to allow the brain to expand fully this is something that is part of our ongoing treatment she will need many many operations and has had to already have quite a few which you've seen she need more operations and this is just part of our process to try and maximize her potential for the future this type of surgery is not something you can do in isolation this is not something that can be done outside a major of setting with a high dependency available intensive care available the most important people right now are the anaesthetic team the nursing team that is with the anesthetic team later on in the morning the most important team would be the surgical team with the surgical nurses after that then it becomes the recovery nurses and then the high dependency and intensive care unit nurses so it becomes a very wide team yet from from the beginning when when there was no hope there for Megan and to know which is all great the operations I've been done that it that the care is there you know and chorus deep you can't help us stay positive it's great for like the difference between when she was born sinner and nearly two years later the difference inertias she's fabulous you know fabulous we were talking earlier with him what's happening now what are they what are they what stage of the at know and just thinking watch what's happening to her you know and just going through the procedure in our heads thinking the worst of us all the time when she was off asleep and everything was tired why she lost but him she was she with a grin she was smiling happy to know I look at the lates and everything she was great you know it was what I was feeling a lot Dave it was feeling but him I haven't gotten a left no thinking about her kept going trying to keep ourselves occupied choice eat Courtney dragged the days after dragon absolutely drags [Music] control of blood loss is one of the major challenges always in this because it's a prolonged procedure and it's very easy in a child with a long procedure not to realize how much fluid and blood is being lost that's that's one challenge in in very simple terms all we're doing is we're taking off the forehead bone and the upper part of the eye sockets were shifting them forward and reconstructing the bone in the in its new position and we do this through an incision which goes from ear to ear whilst this surgery involves the the eye sockets and in fact write down almost the floor of the eye sockets and the other part of the nose all the scars are kept within the scalp or inside the mouth as far as possible and we didn't have to go through any of the facial scars it's important not to create any further scarring if you can not just because of the cosmetic issues that this would return but also because with all the scarring comes restricted growth particularly at a young age the next stage then would be to essentially plan the bone cuts that you do so that you can take off the bone in a manner in which will allow you to put it back together again and as normal a position as possible after a number of drawings mr. Curt would then take off the bone initially using some small holes to access into the cavity itself so that he can protect the dura which is the lining of the brain maybe the neurosurgical Rowland and craniofacial surgery is essentially to try and remove the the skull bones without injuring the underlying structures try to get the disk skull bones off the lining of the brain without tearing the structures underneath once the skull bones are then taken off essentially I put them on a separate table next to the operating table and I work on them and start to put them into a normal position these bones are then replaced into the new position using plates and screws that are dissolvable and we use a significant number of these and it's a little bit like a scaffold a jigsaw that we put back together again in its new position following this it's a matter of closing the incision making sure that we have a drain and on the inside solution any excess blood that develops will be drained out and that reduces the chances of a hematoma or infection since this surgery is is very invasive if you consider what we're doing we're peeling back the layers of the of the scalp and then taking off the bone we're reshaping it and putting it back on but actually from a physical point of view it is not that terribly invasive it's not a procedure that appears to be very painful post-op and we know this because the children do recover very quickly within four or five days they're actually gone home it does even amaze me how resilient some of these children are and how quickly they recover and heal from foremothers is perceived as a very invasive procedure [Music] I've just finished doing the final bits and basses and sewing up the scanner and she looks good looks looks very good the actual procedure we ended up doing we ended up doing by and large what we intend to do in the first place as the operation proceeded we discovered that there was quite a lot of oozing from the bone so that limited doing an even larger procedure she may or may not need something else done to the back of the skull at some stage but that will be purely cosmetic and I suspect that what we've done today should be enough from this point of view it's a subtle change in one way and yet it's a very obvious change in another way she will look quite different to the way she looked that she presented first there's no doubt about that just beginning to get swollen at this stage and by tomorrow she will be very very lucky at her now long table why she still has her endotracheal tube in it's difficult to really give a proper comment on how she looks but it looks north lot better everything what we know thank God just away another way no before we can talk about the ivory long yes everything's done and dusted [Music] you [Music] [Applause] [Music] peeper sitting up at this point of time because she'll be a bit swollen after the operation we'd authorized it to get any worse than she's well she's well she's not a tube taken out she's quiet I don't think she's too uncomfortable she's capable of moving around the place [Music] one of the extraordinary things about Megan and it really was apparent at that first consultation was her personality and a personality that showed she was interested she was very much alive she was watching everything going on around her and that sort of personality that gives her strength as well and Megan has always been very determined herself to recover after each procedure probably recovery for a mother or choice until she wakes up percent an opportune time for you have to be drained correct [Music] it's a the father things can be very different by he was dead [Music] may all day lonely flies [Applause] megan has always been there herself she is fantastic from the point of view of bouncing back after each procedure and saying okay now we move forward in the future Megan is going to need that aspect of looking forward because she she does face a lot of further procedures now none of them are going to be as major as the procedures as the ones she's had done so far we hope but she's still going to need a lot of intervention [Music] I thought and when we've seen our last master operations that would be the worst but him I think I got him when I say you know I was four shocked I went a bit upset in the ICU and they say after surgery then at the back of my understand it's far at the best like it she's going to be good afterwards a Stephanie find the best and we made the right decision 100% a short time after surgery Megan was back to meet with mr. Earley her forehead structure was reshaped significantly and the primary goal of protecting her eyes achieved in order to get at the bones of the face for 'add and skull you have to make a very large incision and the incision basically goes from ear to ear it's made a zigzag so that when the hair grows back the hair doesn't grow with a parting through it the hair will cross over in zigs and zags and the scar will be exceedingly well disguised once she grows a bit of hair again how's Megan amazing oh yeah immediately after the surgery she she would have looked relatively close to the way she looks now but over the 24 hours after the surgery any child who's had a craniofacial procedure gets very very swollen they get a lot of facial and orbital edema so she went through a couple of days of being hardly able to open her eyes very swollen face now that's all settled down that's fantastic ten weeks after surgery the bones will have healed it will all be pretty solid if she fell on the ground she'd be the same as any other child it's not going to compromise the repair and her eyes are very well protected this constantly journey and we're going through it and we get over one hurdle and then same as today no we're gonna see what's next don't blame for the important thing now at this stage is that her eyes are really well protected and the guns that you used to see at the eyes that's stopped I presume you know that when she wakes up in the morning her eyes look clear yeah that's great the next stage for Megan is communication and building up communication we would call her back for communication assess and you met Tanya right here this year yeah Megan Megan is now nearly 2 years old and at that stage you'd expect a fair bit of language to developed one of the problems about any child that needs major surgery is that each surgical episode and each hospitalization tends to set them back quite a bit we are now going to have to look at that from point of view of language learning skills language development and speech and language monitoring throughout so probably right now the most important thing for Megan is the whole communication skills aspect of her growth for the moment I think we will leave her strictly alone let her get over all of this this was very major surgery let her let her just recover from that properly let her scalp settle down and at some stage during the year I'm not sure when we will see how she is at some stage we'll do something with the notching of the upper eyelids it's very hard to believe that is only a year in fact it's less than a year since we first met Megan and her parents she has gone from a child that looked very unusual we were unsure as to what she would develop like we were unsure as to whether she would even survive infancy she's now at a stage where she's beginning to be comparable to other toddlers you're beginning to actually say well now the next milestone she should be reaching as X so we're talking in a very positive way about long term future development this has gone beyond a short-term survival at home in Cork Meaghan is surrounded by family a constant support along her journey of course you you would always think about the journey after coming to but and I don't think you would refers to do another two marks I think you can enjoy yourself yeah I'd say boss I'm all positive things like how far she's after coming in and how happy she is now and just she's smile at you there and you just forget everything she'd ever gone show she said gosh she's amazing you know dancing dancing girl she the dancing dancing baby see that's like what 60 resolution in my plan to time I'm after being in the Arctic you couldn't go show what they're after gone through every day she's learning more and more from us and from the doctors of course I you do you do reflect on it sometimes and can't get the hair items I think both how she cut came over those things and how how happy she is I was thinking back to the surgery and previous match before when she had her a carefully prepared and was I could be totally different choice you're looking at in the bed and were saying is this gonna be more or less than what she's gonna look like and I hope it's Harris explained you you're gonna interfere your childhood she's gonna be look so different so I don't know it's something I can't explain [Music] when you see those talent all swollen and just think oh my gosh you know I is this gonna be okay kinda want to pick him up run away who would have you know the way seeing her like that were helpless it's going to say Oh see how strong she is I can see her pretend to know when she goes to physio know when occupational therapy all this data loss or she is well able fretsaw I think no she needs that bit of a push I treat her too much like a baby and I want to protect her as much as I can why it was only when she went to Temple Street Hospital and doctor early said I can do this I can do that that was that was hope is he going to school it's all fee Mickey Mouse there's a wedding a family wedding coming up now and December and making a such being picked as the lower girl so it's not it it's not it's not even mentioned anymore that's we didn't reach any different deal way that was a good gnarly ground showed we didn't we didn't trees or any different no we started on so we're trying to go up knowing her piggy-wiggy there I hopefully she walk don't joke well if she don't we go oh my god sure where she have a boy wait for around the break with the flowers and up she goes one of the race maids for pusher [Music] just tried to make the best of it and I mean you must have to happen there was some believer but she's American with old oh she's American [Music] you

Channel: Real Families

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Keywords: parenting, mothership, nurture, how to raise your children, childrens hospital, jo frost, jo frost extreme parental guidance, nurture documentary, nurture childrens hospital, nurture jo frost, children's hospital, supernanny full episodes, parenting – topic, what would happen if ten boys were left to live alone together, nurture children's hospital, big family, childrens hospital season 1, 16 kids and counting, boarding school, kids hospital, modernparenting

Id: rs88Z9tnPdg

Length: 45min 45sec (2745 seconds)

Published: Sun Dec 02 2018