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

every two weeks they scanned me, that is, I wouldn't carry her to term, she probably died shortly after

birth

, I'm just exhausted and I don't know, I will live sure that one day the family that we don't expect much another opinion that says there is no point in doing a major surgery here, that's all mine, I'll

real

ly believe in her and give her what she deserves when she was so sick and so depressed, when she got better, then it's like she's never been in a zone, she lays in the Megan has always been very determined to recover after each procedure.

It's been less than a year since we met Megan and her parents. We weren't sure if she would survive infancy. This has gone beyond short-term survival. She is American and has former OSHA certifications. America only with drainage and not normal I was going up not knowing why she was going to be like not normal she is going to live she wanted one that was the worst part of not knowing someone says look this is going to happen this is going to happen that is not he wait come on you just had to deal with it during the scan and the rehearsal later said the babies were this size and four days big and there was nothing to worry about just go back to the extreme we'll scan more and more detailed so that the doctor was there and the doctor I have to stand for 45 minutes, the doctor said, look at the baby, we have a very big cleft and the brain is not forming, as I said, the brother has very little brain; show the brain and there is fluid.

It won't be, and it's a lot of bad news anyway. I said this in late 2009. Medical teams expressed concern regarding the health of Janice's unborn baby. The diagnosis seemed discouraging for her development and survival. Every second we thought we were, they were scanning me and I was calling, I need the brain wasn't growing too much, they said I probably wouldn't wish I didn't carry her to term and she probably passed away shortly after

birth

mentally. I get to participate in RJ's good days. some days I was probably couldn't go to bed some days it's almost sur

real

at the time so I think about you two and we just focused on her as best we could.

We explained that the baby was going to have a cleft. We show First of all, the photos of her from the Internet of

children

with classes and tangled things are the ones that kept me from the day she left, yes or until the months, what are you

giving

in the plane of Bobby? She was due to be delivered in March 2010, it was in February and on February 11. They brought me in for a C-section not knowing what was going to happen and very anxious, very nervous, scared, everything and every emotion during the zones, there is not a cylinder in the room, but the doctors asked us before I look at you, John, to see it. right away but on top of the cleft they told me that's the cleft sauce very said look before handing over saying don't look let it happen take a photo and then show me for them weight decreased she came out there is a race finished bring a paper for us - she is beautiful - no, she was a beautiful woman who was very, very weak and she is not an immediate person then but I saw you Kappa she was she had an hour and she was baptized and she just became Sanada or she is getting stronger and stronger so she She stayed with us for a while in our arms but when she said that she was showing signs that she was getting hungry, she said, look, take her to your knees and warm her up, put her in the incubator and see how she goes and we give her food or a bottle at our discretion, we don't think. that she would feed and then, but then she fed through the tube, I don't know, I think anyone in those shoes carries on as normal, so yeah, we even took a total no and just treated like we treated.

Sophie, there was no public attention for anything we just said look, she's hairy, I wouldn't want to know that we carry on as best we can with her and keep things normal, it's Christmas morning, Merry Christmas, okay, about Wait a minute, dad, that I found in the tree. Coming home after his birth every day was a nice surprise for Megan's family when she was so sick and so depressed when she got better then it's like she was never in the area, she crashed back and Josh is completely tied up and again and used to say. oh my god, like ho ho lo, like hope gets sick and recovers so quickly, so now I never gave up and said no, she will walk away, she will do so with continued uncertainty around her health and she only has a few weeks. the family received more news for the first time there were flashes of light in her daughter's future the first time we raised our temperature in the

hospital

when we met them dr.

McClure Lee sat with us and just watched Megan, just watched her in her stroller and what was written on paper about Megan and as she saw what Megan was like, two different things, two different things, my dad was there, David was there . I never said, "I think it's just something that someone really went ahead and believed in her and met her and gave her what she deserves in life. That didn't start with him, but with him. Lois, when that changed, it was like a total change and a brilliant year. and a half later, Megan and her family returned to Temple Street to meet with several members of the multidisciplinary team investigating the next steps in Megan's journey.

The family when we first saw them definitely didn't expect much. They were hoping for another opinion that said there was really no point in doing major surgery here, she was communicating in her own way and actually had quite a lively little personality. I could certainly see that this is not such a committed child that she does not react to her surroundings since her birth. Megan has undergone a series of surgeries after having injections inserted to drain fluid around the brain. her. Plastic surgeon Michael Early guided Nagin through two major operations to repair her cleft, the first thing done once she was born.

It was after she had the shunts put in and her head stopped expanding well, then she started to show signs of improvement, so when I saw her she was at a stage where she had had the benefit of some growth and the effect of the injections. which had been a great help, we began to look very carefully at the characteristics of what was happening to her and essentially she seemed to have a very defined facial cleft and a craniofacial deformity known as hyperterror with her eyes too far apart. Megan at that stage was quite strange looking, quite scary to people who wouldn't know anything about what a facial cleft looked like, her whole half of her face was wide open, her nose was looking in the wrong place, her head was bigger than normal. normal, she looked very strange, in fact, if she were moving or playing.

Like if someone said her name, would she stop and she would become bright? Megan's progression has been dramatic and a new journey was about to begin as the team investigated the possibility of one of the most invasive surgeries on Megan two days after the lip job and facial. Cleft repair and palate repair were performed in the first two operations. The next plan is to protect her eyes primarily and improve the appearance of her skull, just the top shape of her skull and around her eyes. The fundamental thing about this is to prevent the eyes from drying out. prevent the cornea from drying out and scarring and eventually even causing blindness.

Megan's cranial region was now a major concern that continually impacted her daily life and development. All aspects of Meghan's care were being taken care of. This doesn't last or last and it's not being reviewed and it's brilliant that everything is happening like a parrot, she will be sedated until tomorrow and she will be safe and it will even be difficult that a lot of tomorrow can be quite scary, but I know that when she called, it was more information. for the doctors and they know more and will help you with the operations that await you so it's a good name positive enough about it like I would like to enjoy them too and what will happen tomorrow just the fact that a hosta needs it should end and it helps achieve it in every way and she has nothing good in the way we look at things in life to know that she changed all of our lives really for the better when we look at her like she really has this. kidding, but when you see how good she is and she says you know she makes us feel like we can wake up and do things every day and not too much time and the senior teams, you know, because she gets ahead so she leads us.

You know if she needs a truce, yes, because you are beautiful, you are the beautiful

girl

after investigating the one who is afraid with everything to know what she is looking for, be it true, but then you see how high she reaches, then we say that we are. getting ready for the next step you know she paints but she's fabulous it's thinking about knowing what her heart is but he every day she's happy to be here and we're happy that she's Harewood yes she's the best guard Pusha piggy- wiggy The first few months of Megan's life were filled with a series of surgical procedures and

hospital

visits.

The first lip closure was an important procedure because it is not enough to close just the lip defect, we had to close the In addition to the complete cleft up to the eyes, the second operation that Megan had was the repair of the cleft palate and we managed to do it between three and four months after the first major surgery and that surprised me that she was so capable of doing it. In each procedure you are changing the anatomy that Megan has become accustomed to, she has to relearn her new anatomy after each procedure and that is really one of the problems she would face, her parents would then have to deal with the change in her appearance.

Megan, the next big problem. It was his general appearance and the very strange shape of his head and the fact that his eyes were almost permanently open too wide to look at and that had to be addressed by attending the hospital for further scans, that helped the team monitor Megan's progress after previous surgeries and allowed them to know if they would be able to proceed with a still-uncertain third operation in the coming weeks. Gemma did another in-depth one in June, so this one would be pretty soon. It's just when all the doctors get together and see what's going on. plan together don't think about it too much I think she only thinks about what Olaf is going to happen, it's just that every time we get down to business and I can't, at the last minute, as if things were organized, I grabbed my pen , just make sure it has days. at her sister's job because obviously we have to be new spies, even she has to stay a dumb blonde.

Meghan's case remains of a particularly complex nature and her view was now part of a number of significant concerns. Consultants Dylan Murray, John Caird and Michael Early took an interdisciplinary approach when planning the next steps of Megan's hospital treatment. Megan had her 3D CT scan today and what I would like to know is how we can improve the shape around the short front walk region here first from the surgical point of her. From a craniofacial point of view, if she has sockets like we were looking at around the back knee and from a craniofacial point of view, she needs to reshape the area around the front of the orbits, the next plan would be to do this, which would be I would call it major craniofacial surgery.

The procedure is a difficult thing for the parents to deal with because they have already seen Megan go through two major surgeries and seen her suffer from airway difficulties after the second one and here they are facing another major procedure, the position of her forehead sticks out a little , so we need to advance that area, yes, forward because the forehead bone and the way the eye muscles are attached to that bone and the inside of the orbital cavity, which is a circle of the eye, cannot close your eyes completely. and this, of course, can cause problems with the healing 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 skull and the condition it has. Known as craniosynostosis, we would have done 3D CT scans and MRIs to try to help us plan the surgery in the first instance, but also to alert us to any other issues that may affect the way we perform the surgery. Meghan's case is quite unique. and given the major issues she has, I think all the other sutures, I mean, even just showing my temporal suture there, that lambda is open. One of the concerning issues regarding the diagnosis of cranial synostosis is that the skull simply grows at a normal rate and as a result, the brain does not have room to grow and that can cause increased intracranial pressure, which is something that can affect brain development and would need a bone graft from her back and elevate her as needed, yes when it comes to someone as complex as Megan you need to start with the most critical things and then start with the airway making sure that she can breathe, the vision isincredibly important, obviously, and you have to make sure that he doesn't develop any scarring on his cornea and then things like diet and his intellectual function, so all of these issues take precedence over any cosmetic issues that may be involved, although you already know that. and given nature.

Of the surgery that we do, this is something that we obviously take into account when we plan the surgery, what it will involve is an incision on the top of the head, exposure of the bones of the skull and the orbital areas above and then taking out all that tissue, bones, rearrange them and put them back in the correct way. She really couldn't be in better condition for this, so I personally would like to do everything possible because she is young. Okay, she will no doubt run a lot of operations in the long-term future, but certainly to make this more laughs because, sir, that means she will someday do the lifting on the platform and then remodel the farag, so it'll be sooner rather than later hmm, so we'll probably make Oaks happy that everything is done and we know the next step, so when I, instead of a table where we have our feet brilliantly quite loose right, the ball rolls again for next tomorrow there is no inverted elbow very nervous scared by her brushes she is big she is going north ahead of her she thought she had already been sick she was actually getting measles she has it torn infections ear infections new name I know she liked it pick it up she's back with us I know again she's very well written ready for tomorrow she came too quickly all together too quickly she's in good health than us so she's ready for that and hopefully everything goes according to plan more afraid of us not than her She herself doesn't know what awaits her It was like she knew the face that looks the most closely and I say, I know this place where I'm backing away He's backing away Yes, he didn't sleep well last time, it was like he knew what was happening , he would complain and cry and pick his battles during the night, but he never does.

Dave was going around and around Nate and me. We have been fallen and only mutilations remain. It was my own thought about why she won't, but she's going to stop by just to worry when when you deliver her there, I know, when I walk in the door and that's gone with the Harrods parrot, it's Megan, husband anomaly number four to four. two zero nine date of birth three elevens to take for sex no and try not to think about what happens when he wrote later to see more later yes yes I had to buy kisses I didn't sleep as much intermittently as he does is Well, I know they were going to do it orally and get little

children

to know something good, they are already starting, yes.

Oh, are you tired? Just say: go alone, knowing that no, super awesome intro, it's going to be a long day. I'm Catholic, you won't. The most important thing that has happened. since the last time we saw Megan all together was the fact that she has grown, she has gotten bigger, she is stronger and the objective of this operation is to protect her eyes, we advanced the supraorbital area protecting the eyes better and

giving

them a more normal shape to the eyes. Florida throughout the day what we will do is, first of all, expose the bones and then mobilize the bones, which will be the craniofacial surgeon, Mr.

Murray and the neurosurgeon the three of us will discuss how to shape the frontal orbital crest into the shape we want it to be. The risks of many facial surgeries range from minor to very serious. When a surgeon says very serious, it usually means that there is a very, very small chance of mortality. It is an advanced form of operation, so there is great risk. If you try to stay outside the brain coverings, it means that the meninges remain intact and therefore the brain is safe. all important things once we get to this point like a concern here that your brain is not going to develop properly if you don't allow that skull to fully expand, today's plan is to advance the forehead forward essentially removing it, reshaping it in what That would be considered a normal way in which we can release the fusion of the skull to allow the brain to fully expand.

This is something that is part of our ongoing treatment. She will need a lot of operations and she has already had to undergo quite a few, which you We have seen that she needs more operations and this is just part of our process to try to maximize her potential for the future. This type of surgery is not something that can be done in isolation. It is not something that can be done outside of a specialized environment with a high dependency available intensive care available the most important people at the moment are the anesthesia team the nursing team who are with the anesthesia team later in the morning the team most important would be the surgical team with the surgical nurses after that it becomes recovery nurses and then the intensive care and high dependency unit nurses, so it becomes a very large team from the beginning, when there was no hope for Megan and to know what it's all great, the operations that I've had, which is what the care is there, you know and a deep chorus, you can't help us stay positive, it's great because, like the difference between when She was born a sinner and almost two years later, the difference is inertia, she is fabulous, you know, fabulous, we were talking to him before, what is happening now.

What are they? What are they? At what stage? Know and just think. Look what's happening to him. You already know. And we just went over the procedure in our heads. We think the worst about ourselves all the time. lost but he she was she was with a smile she was smiling happy to know that he watched the latest ones and everything she was great you know what she was feeling a lot Dave was feeling it but he hasn't left me without thinking about her we keep trying to keep busy choice to eat Courtney dragged the days after the dragon drags absolutely controlling blood loss is always one of the biggest challenges in this because it is a long procedure and it is very easy in a child with a long procedure to not realize how much fluid and blood is being lost, that is a challenge, in very simple terms, all we are doing is removing the forehead bone and the top of the eye sockets, moving them forward and rebuilding the bone in the its new position and we do it through an incision that goes from ear to ear while this surgery involves the eye sockets and in fact writes almost the floor of the eye sockets and the other part of the nose, all scars stay inside. the scalp or inside the mouth as much as possible and we didn't have to go through any of the facial scars.

It is important not to create more scars if possible, not only because of the aesthetic problems this would cause, but also because with all scars coming with restricted growth, especially at a young age, the next stage would be to essentially plan the bone cuts that do so you can remove the bone in a way that allows you to put it back together again as quickly as possible. normal a position as much as possible after a series of drawings mr. Curt would then remove the bone initially using some small holes to access the cavity itself in order to protect the dura mater, which is the lining of the brain.

Perhaps Rowland and craniofacial neurosurgical surgery is essentially trying to remove the bones of the skull without breaking the structures underneath, once the bones are removed. of the skull, I essentially place them on a separate table next to the operating table, work on them, and start. To put them in a normal position, these bones are replaced in the new position using plates and screws that are dissolvable and we use a significant amount of these and it is a bit like a scaffold, a jigsaw that we put back together in its new posterior position This is a matter of closing the incision making sure that we have drainage and inside the solution the excess blood that develops will be drained and that reduces the chances of a hematoma or infection since this surgery is very invasive yes Consider what we are doing , we're peeling back the layers of the scalp and then removing the bone, we're reshaping it and putting it back, but actually from a physical standpoint it's not terribly invasive, it's not a procedure that seems to be very painful post-op. and we know this because the children recover very quickly, in four or five days they have already gone home.

I'm even amazed at how resilient some of these kids are and how quickly they bounce back. and healing from my ancestors is perceived as a very invasive procedure. I just finished doing the last few details and stitching the scan and she looks good, she looks great, the actual procedure that we ended up doing, we ended up doing generally what we intended to do in the first place, as the operation progressed, We discovered that there was a lot of suppuration from the bone, so we limited ourselves to performing an even larger procedure; You may or may not need to have something else done to the back of your skull at some point. stage, but that will be purely cosmetic and I suspect that what we have done today should be sufficient from this point of view.

It's a subtle change in one sense, and yet it's a very obvious change in another. She will look quite different to the way she first appeared to present, there is no doubt she is just starting to swell at this stage and she will be very lucky tomorrow on her now long table, why does she still have her endotracheal tube in, it is difficult really give a proper comment on how it looks, but it looks north, much better, all we know, thank God, just another way, not before we can talk a lot about ivory, yes, everything is done and dusted, gazebo sitting at this time because it will be a little swollen.

After the operation we had authorized her to get worse than she is. She is fine, she is fine, they have not removed a tube, she is calm, I don't think she feels too uncomfortable, she is able to move around the place, one of the extraordinary things from Megan and really What was evident in that first consultation was her personality and a personality that showed that she was interested, she was very alive, she observed everything that was happening around her and that type of personality that also gives her strength and Megan She has always been very determined to do it. recover after each procedure probably recovery for a mother or election until she wakes up percent of an opportune moment so that you have to be drained right, it is the father things can be very different because he was dead maybe all day lone flies megan has always been there she is fantastic from the standpoint of recovering after each procedure and saying, "Okay, now we move on to the future." Megan will need that aspect of looking forward because she is facing many additional procedures and now none of them are going to happen.

We hope the procedures are as major as the ones she's done so far, but she'll still need a lot of intervention, I thought, and when we've seen our last few master surgeries, that would be the worst, but I think I've got it. him when I tell him, you know, I was in shock for four years, I got a little angry in the ICU and they say that after the surgery, so deep down I understand that it is the best, she is going to be fine afterwards and Stephanie finds the best and we. She made the 100% right decision shortly after surgery.

Megan returned to meet with Mr. At first, the structure of her forehead was significantly reshaped and the main goal of protecting her eyes was achieved in order to reach the bones of the face to add the skull, a very large incision has to be made. and the incision basically goes from ear to ear. a zigzag so that when the hair grows back, the hair doesn't grow in a part, the hair will cross in zigzags and zags and the scar will be very well hidden once some hair grows back, how is Megan? Oh yeah. Immediately after surgery, she would have looked relatively the same as she does now, but during the 24 hours after surgery, any child who has had a craniofacial procedure becomes very swollen and suffers a lot of facial and orbital edema, so What went through a couple of days where I could barely open my eyes, face very swollen, now that everything has calmed down, that's fantastic, ten weeks after surgery, the bones will have healed, everything will be pretty solid , if it fell to the ground, it would be the same as any other. another child is not going to compromise the repair and his eyes are very well protected this constant journey and we are going through it and we overcome an obstacle and then the same as today not, let's see what's next, don't blame for The important thing now at this stage is May your eyes be very well protected and the weapons that you used to see in your eyes are stopped.

I guess you know that when he wakes up in the morning his eyes look clear, yeah, that's great, next stage. For Megan it is communication and communication development, thewe would call again to evaluate communication and you met Tanya right here this year, yes Megan Megan is almost 2 now and at that stage you would expect a little bit of language to develop one of The problem with any child who needs major surgery is that every surgical episode and each hospitalization tends to delay them quite a bit. Now we're going to have to look at it from the point of view of language learning skills, language development, and speech and language monitoring.

Probably the most important thing for Megan right now is the whole communication skills aspect of her growth at the moment. I think we'll leave her strictly alone. We'll let her get through all of this. This was a very important surgery. We'll let him recover. that let her scalp calm down properly and at some point during the year I'm not sure when we'll see how she is at some point we'll do something about the indentations on her upper eyelids it's very hard to believe it's only a year actually It's been less than a year since we met Megan and her parents.

She went from being a very unusual looking

girl

. We weren't sure what she would develop, we weren't even sure if she would survive the childhood she is in now. a stage where he is starting to be comparable to other young children, you are starting to say that, well, now the next milestone should reach him as X, so we are talking in a very positive way about long-term future development, this has gone beyond a short period. long term survival at her home in Cork Meaghan is surrounded by family and constant support throughout her journey, of course you would always think about the trip after coming but I wouldn't.

I think you meant making another two grades. I think you can have fun. Yes, I would say boss. I'm all positive about things like how far away he is after he walks in and how happy he is now and he just smiles at you there and you just. Forget everything that had ever gone show she said God, she's amazing, you know, dancing, dancer, she, the dancer, dancing, baby, look, that's like 60 resolution on my timing plan, I'm after being in the Arctic, you couldn't go show them what they After going through what she goes through every day, she learns more and more from us and from the doctors, of course.

Sometimes you think about it and you can't get the hair items. I think both how she was shy about those things and how happy she is. I was thinking about the surgery and the previous match before, when she carefully prepared her and I could be a totally different option than the one you are looking at in bed and saying if this will be more or less than what she is. she's going to look like this and I hope it's Harris, she explained to you, you're going to interfere with your childhood, she's going to look so different, so I don't know, it's something I can't explain when you see those puffed up talents and you're like, oh my gosh.

I know this is going to be okay, I want to pick it up, run away, who would let you know the way seeing her like this makes you defenseless? She's going to say Oh, she look how strong he is. I can see her pretending to know when she goes to the physical therapist. I know when it's occupational therapy all this data loss or she's very capable of doing chainsaws. I think not, she needs that push. I treat her too much like a baby and I want to protect her as much as she can. Why was it only when she went? to Temple Street Hospital and the early doctor said, I can do this, I can do that, that was it, I hope, if you go to school, it's all paid, Mickey Mouse, there's a wedding, a family wedding, coming up now and in December, and someone like him will be chosen. inferior girl, so it's not like that, it's not even mentioned anymore, it's that we didn't come to any different agreement, that was a good gnarly terrain, we showed that no, we didn't make trees or anything different, no, we started, so we are. trying to get up knowing your little piggy there I hope he walks don't joke right if he doesn't come on oh my goodness sure where he has a kid waiting around the landing with the flowers and up one of the The career maids for pushers just They tried to make the best of it and I mean, it must have happened that there was some believer, but she's American with age, oh, she's American.