My name is Jody (27), I’m married to Dan (33) and we have 3 healthy sons (5),(3), (20mnths) and have just had our long awaited daughter on 23rd Nov 08- Daisy Blossom xx We live in Rochdale in Greater Manchester.
We were unaware of any problems wth Daisy and took it for granted she’d be healthy as her brothers were. I was induced due to SPD at 38 weeks and after a rapid delivery gave birth to 7lb 6oz Daisy. She was mucusy and required suction but still nobody knew… Only when I breastfed her and she went blue she was transfered to special care for tests.
After suspected TOF/OA Daisy was transfered to a more specialised hospital (st Mary’s, Manchetser)who confirmed her diagnosis. We were absolutely devestated and struggled to take in the news. Daisy was 4 days old when they performed the operation. We were lucky that the fistula was sorted and the upper pouch of the oesophagus was extremely long (very rare apparantly??). The surgeons managed to join the 2 ends although the lower pouch was very poor quality muscle and very under developed and narrow :-( At the end of her operation they attemtped to pass a tube through the join but it was too tight so they had to repeat the procedure and thankfully her upper pouch was so long, however her stomach was pulled up slightly.
Daisy made a remarkable recovery and soon beagn haveing my EBM via a tube.. eventually leading to oral feeds of EBM and actuall breatfeeding her (amazing! never thought i’d get there). She was discharged at 17 days old.
She had only been home for 1 week when she started showing signs of stricture.It was confirmed on our arrival to another specialised hospital in Pendlebury that she had in fact structred to almost closure. She had her 1st lot of dilitation and had another 3 day stay in hospital. Her Consultant said it was to be expected as her join was very tight and narrow.A further stretch was booked for 4 weeks time but we didn’t make it.
Only 2 weeks after the 1st dilatation we had to call 999 as her mucus had blocked her airways and she was going blue. We were taken to our local A & E and again transfered to Pendlebury where a 2nd lot of dialitation was performed, this time they managed to stretch her with an 8mm balloon instead of a 5mm balloon so that was some progress i hope. Daisy had a reaction to the general anesthetic this time and stopped breathing again a further 7 times. The consultant anethetist said this was because she also has bhroncilitus ( oh great!).
We were discharged on New Years Eve night and this is the first time I have found 5 spare minutes to join the board. I am so despeate for support I can’t even begin to tell you. I am battling with all my post natal hormones plus the trauma of the past 5 weeks and the uncertainty of the future. I’m frightened t death to fall in love with Daisy in fear of her being taken away from me.
I am still waiting for her chromosome test results to come back but she also has a right aortic arch which apparantly, coupled with the TOF/OA can be part of a chromosome abnormality called Q22 deletion. I have not researched this as I’m trying to stay positive and not take on too much information.
Daisy takes 2.5 ml of omeprezole for reflux each day and I am breastfeeding but just watch her like a hawk. The most difficult part of all this is the balancing act between hospital stays and looking after my 3 small boys. They are all so young and need me. I feel like I am running on empty at the moment after no sleep in hospital and having to express breast milk every 3 hours if she can’t feed/swallow.
I don’t know what I’m looking for to be honest? I guess just a friend in a similar situation or someone who has come through it. I haven’t read any of the msg boards yet as I haven’t felt ready but now I am and so will do so. I can’t imagine what our family’s future will be as I have no idea what to expect.
Thank you in advance for rwading this and I hope I don’t sound too much like a drama queen. The whoe thing has knocked my confidence as a parent and I am terrified of something serious happening when my husband goes back to work on 5th Jan. I’m always a busy person with many commitments with the kids such as school runs and nursery drop offs, swimming lessons and toddler group so I can’t afford to just curl up into a ball although I want to.
I have so many questions on my mind all the time and our local health professionals can’t help as most of them have never heard of TOF/OA so my health visitor and G.P aren’t available as I’d like/need them to be. Is it normal to need dialitation so soon after the primary repare? and further dialitations so soon after?
I will stop waffling now. Thank you again for reading.
Hi
I just wrote you agreat long reply and my computer went down!Anyway welcome and big big hugs.You are doing really well and have overcome the first hurdles.It is terrifying and we are all here for you. I had twins at 32 weeks (girls) one with TOF/OA.she had a cardiac arrest in her first surgery so they completed it on day 10 of life and the whole experience was so horrific.I gave up expressing on week 3 as no milk due to the trauma and exhaustion.Millie required an immediate dilatation but the surgeons would nt do it as she only weighed 1.6 kilos and she had to be over 4 kgs so they put an ng tube down during surgery and sellotaped her mittens to her babygrow (she still pulled it out!).She was fed on nutri prem as this has loads of calories and vitamins and at 3 months they did the stretch (dilatation).I found it so hard with a prem twin and then her at home and my husband had started a new job so only got 2 days leave then had to go back.I crawled through those early days.However I found this board a godsend and you have the support here.Dont expect your health visitor,GP to understand the condition.Tofs office can send you specific leaflets for your GP etc.You should have a community nurse from the outreach team assigned to you to support at home, plus get your surgeons secretary’s number so you can call direct. Dont worry about the other diagnosis at the mo.Lots of things are associated with TOFS and we had to wait ages while a barrage of tests where performed and medical people scared me stiff.Millie had heart scans at the Royal Brompton and they were going to move her to Great Ormond st although eventually it was clear she had isolated TOF/OA.In fact she did a tour of London hospitals!You can deal with any additional stuff if it becomes a reality but you have enough to deal with right now.We are all here for you.Post and let us know how you are getting on.I promise it does get easier and other parents who really understand are a massive support and source of comfort
Big hugs and keep in touch
Anna , Millie(TOF/OA) and Issy xx
Hi Jody
I know we have been in touch already but just wanted to say it is great to see you on here. I have found this forum an absolute godsend since Eva was born. First of all you are doing amazingly well what you have been through and are still going through is so hard but things will start to get easier as you get used to Daisy’s condition and as she gets bigger and stronger she will improve. Poor little thing having bronchiolitus on top of everything that is a really horrible virus. It must be so hard jugging everything I have always been pleased Eva was my first as I’m not sure how I would have managed with other children to consider as well. It is so hard when local professionals can’t help as they have no experience of TOF/OA…..when you feel ready there are some great leaflets on here specifically for health professionals which explain about the condition and you might find it helps to give them a copy so they have some idea of what you are talking about.
There isn’t much else I can say really that I haven’t already said to you before but you do have support on here and just post whenever you need anything there will always be someone who can help!!! Don’t forget you can always contact the TOFS office and they can put you in phone contact with other parents near to you.
Chin up and try not to be too afraid to enjoy her as much as you can.
take care and lots of love
claire xx
Claire, I didn’t know it was you from BC and FB. I’m just making my way around the site at the moment and hoping to get some support from it. Hope you are ok and Eva too xx
our 3rd child peter was born in march this year and had his original op done at st marys also, by ross and miss humphrey
subsequent dilatations have been done at pendlebury also.
peter is almost 10 months now and he has good days and bad days.
we perservered with the breastfeeding, we cracked it after the 6 week mark, i found it easier than bottlefeeding and i think peter did too mainly because he can control the flow.
anyway, we live in leigh (near wigan) which is about 45mins away from rochdale but i spend alot of time at the trafford centre way as i have family and friends that way.
anytime u fancy,meeting up would be great.
pm me if you want my number
ive replied without looking properly at how old your daughter is but I just wanted to say that it does get easier, the hardest thing for us was accepting it and feeling confident in dealing with the daily troubles, although peter still has problems, we are coping with it much much better
Thank you for taking the time to reply to me. Wow! I can’t even imagine having twins with one of them with TOF/OA. It must have been so awful for you. I can’y believe Millie pulled out her ng tube- we were terrified of that happening to us.
You mentioned in your post about getting hold of the surgeons secretary’s number. How would I do this? and what would I need it for (i know that sounds a bit silly). Can I just ring for advice etc?
I get a visit each week from the homecare team who are great but I dread the day when they have to leave me. The most scariest part of it all so far is the emergancy element surrounding it. I can deal with routine dilatations and post op complications. It is the restriction of airways and breathing thta scares me to death. I think I will ask for some suction equipment as I believe you can ask for that?
Daisy’s surgeon is Mr Racosczy (sp) and he was helped by Nic Lansdale (who left last week). Is your Ross called Ross Craigie?- a lovely man who takes them time to talk things through with you? I met him last week at Pendlebury if it is.
Meeting up one time sounds good but at the moment I’m frightened to plan anything as it might get cancelled due to Daisy possibly needing to go back to hospital. They have given us 24 access now at pendlebury so that is good for us, much better than hanging around our A&E;waiting for a transfer.
Daisy is 6 weeks old today by the way. I do hope it gets a littlw more predictable and the length of time inbetween dilatations increases.
Can I just ask? How do you get your tickers on your signature? I am a member of babycentre and have some tickets and a glittery name but can’t seem to upload them onto here. Also, I can’t get my photo up either.
I’m still learning how to use the site - when I reply to people does it reply to the thread or the person directly?
Daisy’s surgeon is Mr Racosczy (sp) and he was helped by Nic Lansdale (who left last week). Is your Ross called Ross Craigie?- a lovely man who takes them time to talk things through with you? I met him last week at Pendlebury if it is.
Meeting up one time sounds good but at the moment I’m frightened to plan anything as it might get cancelled due to Daisy possibly needing to go back to hospital. They have given us 24 access now at pendlebury so that is good for us, much better than hanging around our A&E;waiting for a transfer.
Daisy is 6 weeks old today by the way. I do hope it gets a littlw more predictable and the length of time inbetween dilatations increases.
Can I just ask? How do you get your tickers on your signature? I am a member of babycentre and have some tickets and a glittery name but can’t seem to upload them onto here. Also, I can’t get my photo up either.
I’m still learning how to use the site - when I reply to people does it reply to the thread or the person directly?
Thanks again for getting in touch
yes its ross craigie!! he is lovely, was really helpful at st marys, explained everything so well and we usually see him in clinic instead of miss humphrey.
we too used to be worried of making arrangements then cancelling but we dont now, if peter needs to go to hospital, plans get cancelled, people understand. we too can just take him straight to acute referral if we have any concerns.
if you want your consultant secretary number, ring the main switch and ask for her number, they should give it to you. I have got miss humphreys secretarys number and she too is very nice and helpful.
how many dilatations has daisy had? peter has had three, but none since september, fingers crossed, no more ever or for a while at least.
i have got my tickers from lilypie, then just copy and paste the url into your signature bit on your account on here.
when you reply on here, everyone sees it, (i get an email notifiying me that someone has replied to a thread i have subscribed too)
or you can pm someone, by clicking on their name and choose the option to send an instant message. hth
it would be lovely to meet up and if you have to cancel at the last minute thats fine, its entirely up to you.
i hope you have been getting some support/comfort from this website, the info on here is invaluable.
Hi Jody,
My son was born at 38 weeks, by emergency c section, as he had failed to move all day, and then his heart rate disapperared. I carried 7 litres of fluid, so after a special fetal scan we discovered he was a tof/oa baby. He to had a long pouch so was able to connect it all up. He did however end up with a hole, which meant stuff was going into his lungs.
Theo is awaiting test results for 22q deleation. He is under Great Ormand Streets. He is fed by tube NG tube as his swallow is unsafe. He is 8 months old, and has to older brothers.
Please get in contact if you want to know anything further.
Hi Jody,
I have just read this thread and my heart goes out to you. I know how I felt after my husband and I were told about our daughter, Maisie, just turned two. I too was induced at 38 weeks due to spd and we had no idea of the condition. It is normal to feel so scared and completely lost, I did, and it does get better. You will have good days, really awful days and days where you just plod on because you have to. You will become used to Daisy’s condition and you will gain a wealth of knowledge about it, it just takes time. Take every day at a time, take things at your own pace. You must be mad busy in the morning doing the school and nursery run, but if you are running late explain to the teachers about Daisy’s condition and that it takes more time than usual to look after her and you may be late occasionaly. They will understand, I had to do it. My little boy was 4 last week and he has often been late for nursery, his teacher really understands, it just takes a little bit of pressure off.
Definately call your surgeon’s secretary if you need advice or are worried. Maisie has had a really bad winter and had 3 stretches in 5 weeks, she has been really ill with a virus too but is now doing much better. You will go through periods where things are looking ok and then you feel like you are taking 10 steps back but you will get through it I promise.
Whatever you do Jody dont be scared to fall in love with Daisy. Fall completely head over heels in love with her, it will get you through everything. You wont be able to get this time back when she is grown, no matter what happens in the future you will be the proudest mum in the world of your little TOF baby. You will cry, laugh, feel scared at times but when you look at her you will see how brave and strong she is and you will be in awe of her and find her amazing. You are both amazing, you really have got your hands full and you are doing brilliantly. Be proud of yourself too. You can PM me if you need to talk to someone.
Be strong hun, have a cry when you need to, and remember to take one day at a time.
lisa.xxx
Hi Jody
Your homecare team wont leave you until they feel you are all ready and you no longer need support I promise. In the end mine only worked out her reflux meds increase so they took us off the books but that was after a year. I asked at the consultants check ups for the secretary’s number once he’d ok d it.I can ring and if she doesnt answer a paed surgeon does and tells me whether to bring her in or what to do next.I had all the rescus training and choking training but cant really remember anything!In an emergency call 999 and the choking becomes a part of life.My non tof twin reminds me daily that all babies cough, gag and choke on food so its a reality check that its not always a TOF thing!One day at a time and be proud of the small steps that are massive to us TOF mums
Anna xx
Theo is awaiting test results for 22q deleation. He is under Great Ormand Streets. He is fed by tube NG tube as his swallow is unsafe. He is 8 months old, and has to older brothers.
Hello Cheryl
Lovely to ‘meet’ you. Have you had to wait for 8 months for Theo’s chromosome test results? Goodness that is a long time. I hope you are ok and he is doing Ok. Thanks for getting in touch x
Thank you for replying to me. I cried when I read your post as it made me think about how I have been thinking about Daisy. You sound like me being induced at 38 weeks for SPD. I kinda wish I’d gone overdue so she’s have been bigger and stronger to withstand the op and stretches.
Mornings are totally crazy at our house as you can imagine but I have a good husband who helps and takes 2 of them to school & nursery.
I can’t believe Maisie has had 3 stretches in 5 weeks. I thought Daisy was bad having 2 in 3.5 weeks. I thought the frequency was supposed to decrease as they got older??? Is it normal for your Maisie to need so many dialitations?
I also wanted to ask people about anti biotics??? Daisy has broncholitus (sp) and they haven’t given me any anti-biotics or inhalers at all- is this ok? Should I ask for some?
What was Maisie’s initial operation like in terms of length of pouches? was it easy (if i dare say that word) or a difficult repair?
I am only asking you all this as she seems to have had a lot of stretches like Daisy and I wondered if Daisy’s future might be similar to Maisies. I know you can’t compare them but just get an idea?? xx
Hi there, I have twins who are 2 years old, one of whom had TOF/OA. I live quite close by in Huddersfield, but the better news is that I work in Rochdale! Your post rings so many bells for everyone. Trust me, we have all been there, the bewilderment, frustration, anger, crying, crying, crying…
The past 2 years have been the hardest of my life, and it still isn’t easy. Harrison continues to have his problems, however, we now feel that we are at a place where we can more or less cope. I know it will sound absolutely unbelieveable now, but honestly, you do get used to it.
This website is an absolute, total, complete Godsend. Without it i would have jumped off a cliff months ago.Iknow whenever I am feeling overwhelmed I can submit a post and someone will always respond. I have made so many friends on here, and the great thing is we all understand each other. And it’s not all cyber-friends - we do actually meet in person!
I have just been to Cambridge for the weekend to meet my little TOF chum Laurie and his Mum n Dad (hello Mark n Rachel!!) We meet at the TOFS conference, then e-mailed, then eventually got round to meeting up. Then there are the other various get togthers. (Hello Anna and the twins!!!) And everyone else we’ve met over the months.
I am based in Heywood. Where abouts are you? I work in schools, so am familiar with quite a few of the schools in Rochdale - I guess you’re older children go to a school I would at least have heard of!
If you like, we could chat on the phone, and maybe we could meet up one day - I am more than happy to meet in Rochdale, seeing as I am over there most of the week anyway!
Just get in touch. My home e-mail is…
(please ring tofs office)
(please note the spelling of ‘clarie’ in the e-mail address, stupid BT couldn’t spell my name when setting up my account!)
Alternatively, call ot text me on (please ring tofs office).
Hi Jody,
How are you? Maisie’s initial repair was at one day old and I think it was an easy repair, she had no problems from the surgery. She had holes in her heart and one side was enlarged, she had a million tests, the enlarged side of the heart went to normal size and thay kept a check on the holes but they have closed and she has been discharged for the heart problems. A couple of days after her surgery she pulled her tube, which was a problem as she had not had any food. Her body was swollen twice the size from surgery and we were told if they couldnt put a line in they would have to take her into theatre to put a line in her chest. We had stayed at home that night with our son and were called to the hospital very early to sign consent forms. When we got there she was surrounded by surgeons, to cut a long story short she was suffering respitary distress, the surgeon told me she was at risk of heart failure and we were basically told that she could die that day. She was rushed to intensive care with a crash trolley behind her and we heard the sister tell the dr that she was close to crashing. I think that day was the worst day of my life. She was ventilated for a second time and the next day she completely turned a corner and began to improve and was taken off the ventilator the day after. TOF babies are fighters!
I began weaning around 4mths old, she had her first stretch at 11mths then one about 4 mths later and the last 3 before Christmas. Sdoes have real difficulty eating, she gets food stuck every day, she has choking attacks. From what I have readon this site every baby is so different. She can eat things that disolve easily in the mouth, eg rusks, quavers, ritz crackers she can eat raisons. I dont think she has ever had them stuck. Everything else has been. You think you are doing great one day and the next she can hardly eat anything. She is on ranitidine, domperidone, a blue and brown inhalor (my gp gave the inhalors). Stomach Acid can cause strictures and we were told she may need a fundoplication, I take her to clinic next week.
This winter has been truly awful, I felt like there was nothing I could do to help her. Her tof cough was unimaginable and she coughed so much she was sat in a heap just exhausted. I took her to the gp, a&e;, she was given no anti-biotics as she didnt have an infection. I felt so, so sorry for her. I was sick , my boy was and my husband is working away! I have a great family though who are really supportive. Its hard on my husband he feels like he is leaving us alone, but he has to go where the work is. At the moment she is doing ok, bossing her big brother around, having tantrums in Asda and lying on the floor like a star fish kicking and screaming without a tear in her eye!!lol So things are back to normal for now. She got her tea stuck tonight but with plenty of juice she got it down and finished the plate!
I cant say it enough, take each day at a time, whatever is thrown at you you will deal with it, your whole family will. My boy pats her back and gives her juice, he tells me when she has something in her mouth. Your life will adapt, it just takes time.
Daisy will be ok and like all the TOF babies they know no different and that is a good thing, they are growing with the condition and are learning to cope with in their own way.
PM me anytime, whenever you need a friend.
Take care, keep in touch,
Lisa and Maisie.x
