Sue and William Tandy
England, UK
Our NAIT Story
Vanessa Rose, b Aug 2006
My first pregnancy was not an easy one. I had a suspected miscarriage at 8 weeks, but my little fighter survived the odds, I had problems with my Asthma and went through the guilt of taking Prednisone Steroids during my pregnancy, I had SPD (painful pelvic disorder) & another big bleed at 27weeks, but I survived and on my due date I had my 1st contraction …
Tues 8th Aug 2006 was a match day, Watford v “some European team” and the road was closed to traffic to get the away supporters away from the stadium. One Jeep tried to push in front of us at which point I shouted out of the window “Please don’t push in … I am in labour”. You have never seen a grown man reverse so quick! We realised that the traffic was being controlled by police so hubby leapt out of the car and a scared looking 20yr old (or is it us that is getting old when the policeman look young?!) gave us an escort through to the hospital.
Anyway I was in agony, not helped when the midwife told me I wasn’t even in active labour! Luckily another midwife spotted that the pain was in my pelvis and it wasn’t the contractions causing pain, and we discovered I had an undiagnosed urine tract issue … so they were going to induce me.
I had an epidural, bliss, the most comfort I had been in weeks. By 12 noon I had registered no contractions on the monitors but on examination I was 9.5cm. However I lay there chatting to the midwife with my legs crossed at the ankles for most of the time as that was how I was comfortable until about 3.30pm when I had the urge to pee and then push.
My original midwife had to go off duty and another one arrived. I was asked if the student midwife could deliver as she only needed 2 more “normal” births to qualify. We asked what normal meant, explaining the inducement and were told that so I long as I didn’t do anything silly like have a retained placenta I could count.
The baby came out in about 10 pushes (Hubby was counting – not me) and at the point where the midwife was supposed to stay stop pushing to help ease the head out she actually said “St … oh never mind, too late!” My baby just popped out like a champagne cork from a bottle.
But baby Vanessa Rose Tandy had been born. She was over 50cm long and weighed 7lb 3oz.
Vanessa was covered in little spots, petechiae, just like the spots for meningitis that do not go down under pressure. Pediatric nurses came and took swabs, but she was allowed to stay with us. After about an hour, we were swearing at the student midwife for jinxing me, as I had a retained placenta and I had to go to surgery.
I did not know at the time, but as I was wheeled to surgery, Vanessa was wheeled the other way to special care and an incubator. My hubby was left holding the bags with the 2 ladies in his life going in opposite directions. He followed Vanessa.
I was told after surgery that she was in special care as she had got cold and couldn’t hold her temp and they needed results back on the spots. I was wheeled up to see her and then down to a special room where all the other ladies had their babies within SCBU (Special Care Baby Unit). I was allowed to stay in the hospital until Vanessa could come down or they needed the bed.
Thursday 10th Aug At 3am I was being woken, to try and breast feed, or so I thought. I was actually asked for permission for Vanessa to have a blood transfusion. The words platelets and brain scans registered but did not mean anything to me. My response? Give her whatever she needs and explain it to me in the morning when my husband is here.
The Drs, nurses, & midwives saved my little girl’s life. There is no doubt in my mind.
The consultant thought something called NAIT (later learnt to be Neonatel Alloimune Thrombocynopenia) was the cause of the spots and it meant that my body had killed off Vanessa’s platelets and her count was 4k instead of 300k. If she had needed a ventouse she would not have survived.
Hubby & I gave 6 viles of blood each to be sent to Cambridge blood labs to determine if this was the issue.
Monday 14th Vanessa was allowed in the ward with me and I was responsible for her for the first time.
Tuesday 15th Vanessa was allowed home. Platelet count of 39k (the “What if” possibilities of this really scare me, so I try not to dwell … I knew nothing at that stage)
Friday 18th We had a visit from one of the SCBU nurses. The diagnosis was confirmed, Vanessa had NAIT and needed to have daily heel prick tests to test her platelet levels, 10k, trip back to SCBU for a platelet transfusion
| Date | Count | Comments |
| 9th Aug | 4k | Birth |
| 12th Aug | 87k | |
| 15th Aug | 39k | Discharged from hospital! |
| 18th Aug | 10k | NAIT Confirmed via bloodwork – transfusion took count up to 110k |
| 22nd Aug | 56k | Another transfusion |
| 25th Aug | 66k | |
| 26th Aug | 44k | Blood in Nappy, agghhhh trip to A&E, heel prick test, transfusion |
| 29th Aug | 87k | |
| 1st Sept | 73k | Rate of decline is slowing |
| 5th Sept | 67k | |
| 8th Sept | 104k | Turnaround point!!! |
| 13th Sept | 125k | |
| 25th Sept | 220k | Above “normal” Woohoo!!! |
| 20th Oct | 442k | Last test – Vanessa considered “normal” |
Sometime during that first week when Vanessa & I were in the special care baby unit, by wonderful hubby left on google and did some research. He didn’t know it at the time, but he found me the most wonderful group of people who have this amazing capacity to love and support people they haven’t even met, he found the Yahoo Health Group.
I learnt so much, including how very lucky we were not to have had any bleeds. Vanessa was meant to be, I worried about taking Prednisone, in my next pregnancy I was to beg for it as it helps the condition! Vanessa was back to back, which can be the worst type of vaginal labour needing ventouse or other assistance, but due to my urinary tract infection I was induced and she twisted last minute and came out easily. We were truly blessed.
Early 2007 The first thing we did was get a referral to a consultant to understand what the process in the UK was … we wanted all the facts before we were ready to make the “do we want another” decision
We met with a geneticist who explained that our chance of having another NAIT affected baby was 50%. A simple explanation of what NAIT is can be understood with this chocolate analogy.
Every person gets 2 M&Ms (platelet types), 1 from each parent. I was given 2 chocolate, my husband was given 1 chocolate and one peanut. In my pregnancy with Vanessa he passed on a peanut M&M and my body went … agh peanut, that’s not part of me, I am allergic to that, ATTACK. Because my husband had 1 choc and 1 peanut any future pregnancy had a 50% chance of him passing on a peanut or a choc, therefore 50% of an issue.
With the help of the Yahoo group we gained the confidence to expand our family.
Ryan Matthew, b May 2008
Nov 2007. We are pregnant again. The scary rollercoaster ride begins.
Early December we met with the consultant again who explained the treatment protocol. The plan was to have a CVS at 12 weeks (was told that this had no greater risk than an amnio, but would get the results quicker), then IF baby was effected we would start treatment (IVIG) at 16wks, PUBS (Percutaneous Umbilical Cord Blood Sampling) to test baby’s blood, increase IVIG if result not good enough, another PUBS at 34wks, C-section at 37wks. Well that was the plan!
What actually happened At 12 weeks we went for the CVS to discover that I was actually 13 weeks pregnant already and in addition to that the baby was not in a safe position to do the test and there was an elevated risk of miscarriage. So terrified at the additional week’s wait but back home we went.
At 14 weeks We had a friend drive us as my hubby was recovering from a hernia operation and after the CVS and I wouldn’t be able to drive home. It was a very scary and painful procedure. Success we were able to have the test. A 2 week wait began …
At week 16 We got the results back that the baby was free from Downs etc. Funnily enough we were not worried about these results as there was nothing to suggest that we were high risk, but when waiting on the end of the phone for the results the nerves really kicked in!
Feb 14th (wk 17) At last we got the results back. It had taken so long as the DNA taken was not enough and so Bristol had to cultivate it before doing the test! At the same time we were waiting to see if I was immune to Slap Cheek which was in Vanessa’s nursery at the time!
The baby WAS affected. According to the original treatment plan I was already a week behind in my first treatment. I wanted that treatment NOW.
First IVIG This was done in Hammersmith. There was a huge delay and so they actually gave me an early anomaly scan. It was great to see the baby on the scan, but doing it early was not a good idea as it through out some questions relating to the size of the baby’s head! These proved unfounded when the real anomaly scan was done at 21 weeks.
2nd IVIG in the haematology dept at Watford General Hospital.
Wed Feb 27th I am still fighting with NHS to get sensible treatments locally. I had to go to a day unit this week and as they shut at 6pm, I was kicked out having only had 6 out of the 9 bottles I needed and had to go back the next day! This time however they did pre-med me with Piriton (antihistamine) and so with the break as well I am hoping that the debilitating headache doesn’t kick in this time. My blood pressure is normally around 120/60, but during all 3 sessions it dropped to 96/48 type figures and everyone was happy with that. In fact they were more concerned with my temperature, although with the help of paracetamol it didn’t actually go above 37.4, so I am not quite sure why such a high level of concern.
4th IVIG My consultant had managed to get me onto the Elizabeth Ward in the maternity wing. Finally! I am now surrounded by midwives who understood the hormonal hysteria about getting this treatment, who didn’t prioritise me last in the group as I was only a temporary patient. In addition I got to know all the midwives and another long term inmate! I got to listen to my baby’s heartbeat every week.
The first treatment gave me an absolutely stinking, debilitating headache. At WGH I was given IV Piriton as a pre med, combined with paracetamol during the treatment, plenty of water and dolly mix to keep my sugar levels up the headache was manageable, but I was knackered. The treatments started at 6am on a Thurs and finished about 10am on the Friday.
The hardest part was finding a decent vein to put it in as they weren’t healing quick enough in between treatments. I upset many a dr by asking for it to be put in my feet, where the veins were better. Some were able to do it, some were not!
Week 24 – Fetal Blood Sampling (PUBs) Wed 19th March Very nervous, or rather terrified. This is due to the risks rather than the results themselves. I was a wreck for the CVS, due to miscarriage risks, and now I know how much it hurts(!!!!), but also that it will give treatment options that not knowing how wriggler is doing can’t provide. It is just that there is a risk and at 24 weeks so much has already been invested part of me feels it is irresponsible to expose him/her to that risk, on the other hand the risk of not knowing the count is probably even higher as previous posts have proved. What I expected was not what actually happened. The CVS was very low key. Just one consultant, hubby & I. This time the room was full, c13 people in all, all in blue scrubs, with platelets on hand for instant transfusion if required.
It hurt even more than the CVS. I think all the “theatre” about the theatre would have increased my dread and made it hurt more as I certainly was not able to relax. I had to have IV antibiotics and anti- D (yes I am Rh Neg too!).
The Results … If the count was > 100k then all was well with the world and we carry on with original plan If it was between 50-100k then we would increase the treatments, but no transfusion If < 50k danger zone. Immediate transfusion and increase the treatment.
Wriggler had a count of 74. I was by far the most upset by this, more than Mr Kumar or his team, more than my husband. We needed a revised plan…
So treatment was now going to take 1.5times longer, but this was still going to be done on one day as I didn’t want 2 interruptions to life per week, I was still trying to work and it was so hard not seeing Vanessa for one evening and one morning. I had only ever been away from her for 3 nights in her whole life until now.
My specialist is in London, but I am getting the treatment locally and will deliver locally (after all I believe the local drs did save Vanessa’s life having been born with a count of only 4k). My local consultant also trained under the specialist in London and has his mobile number on her phone so gets through to him straight away if anything is not clear, and I have to say that is really reassuring to me. She also fought to keep me as her patient even though her clinic clashes with my IVIG so she has to see me outside of normal hrs! Week 30 2nd PUBS was brought forward due to the previous low count the platelet count was only 2!!!! DANGER ZONE
They did a recount and it only went up to 5. Needless to say we had a platelet transfusion there and then, so the little fella had 170k when we left the hospital.
I couldn’t stop crying. A scan showed that there were no obvious signs of any bleeding but that we needed an MRI scan to be sure, but that the whole dept were on a conference until Monday so we couldn’t even get a date organised.
New Plan Weekly PUBS & platelet transfusions every Wed. Continue with current levels of IVIG (1.5g per kg) Steroids for lung development at 32 weeks Delivery at 34 weeks
William & I are completely shell shocked and have been unable to process this and questions are beginning to surface now that we could not think of while we were sat with our consultant.
What are the issues with a 34 “weeker”? Little fella is currently 3lb (30wks +2d). The ladies on the NAIT group were great and were able to reassure me that a prem baby will be fine and I know wriggle would be better on the outside.
Feeling rather scared (but also very relieved that we had the pubs and have been able to do something to help him), yes by now we know he was a he, but I can no longer remember at which scan in Hammersmith we found out.
At the 24wk test My consultant said that prednisone (oral steroids to supress my immune system) would only be added if increasing to 2g/kg was not working. However today he said that he did not think it worth adding as steroids take a while to kick in and would have delivery issues. He believes the best treatment to be the weekly transfusions
He hoped the pubs count was off and sent a sample to the hematology lab but that too came back really low and after the transfusion the count came back at 170k so he believes the count, although he does think that the platelets may be a little higher as they can clump together and give a false reading, but even so it would not increase much even if it hadn’t clumped
I rang my mum and work, then set off for a weekend away where hubby was supposed to be on management training / team bonding weekend and the wives were being treated to a spa weekend.
His work were great and William bailed out of the course and we just had a weekend in a spa hotel and joined the company for the evening meal on the Saturday.
Before going to bed on the Friday night we posted our woes onto the NAIT support group and had an early night.
Saturday
Saturday morning, still in shell shock I signed onto the Yahoo group again. I had 32 messages! My
response to the lovely ladies on the board was …
Dear all Yesterday after posting we went to bed early and this morning I logged on and read your replies one after another after another and my eyes welled up too much to be able to type back. I can’t put into words what that support meant (Steph you are an angel for starting this board)
I will be getting on the phone on Monday to arrange an appointment with my local consultant to get a revised date, even if future pubs means this changes I need something to hang onto right now. I will also get a tour of our Special Care unit and see if I can speak to the pediatricians. Hopefully i will also get hold of the date for the MRI. This is the bit I am most nervous about at the moment just in case it reveals anything the scans didn’t. The pubs seems to get less scary each time.
We will be seeing the specialist again for the pubs on Wed, but do not hold out much hope of him adding Prednisone as we have asked for it every appointment, and he really doesn’t see the benefits but in all other respects he is well read on NAIT and a specialist for blood issues (he does weekly transfusions a lot for other conditions) so have never felt the need to rock the boat trying to try and be referred elsewhere (UK NHS means we don’t get the same freedom in choosing drs as in the states). I feel the weekly pubs/transfusions on top of ivig is the safest route based on where we are.
I’ll let you know the count on Wed
Thanks again for all the messages & reassurance about premmies Sue.x
Wed 21 May
I had my 3rd pubs (2nd transfusion) and have to say it seems to hurt less each time, but part of that may well be mental as instead of focusing on the risks I am focussing on knowing 100% that my baby needs this and it is essential.
Today’s count was 71, which means that the little fella has lost 100 platelets over 5 days. Obviously we were happy with this as he is not in the danger zone and a 45ml transfusion of platelets brought the count up to 285. The next transfusion is next Wednesday and Mr Kumar is expecting a count of about 110 (fingers crossed)
Feeling a lot less emotional than last time I posted(!) and the transfusions should keep the little fella safe until delivery.
IVIG tomorrow (local hosp) – hubby will pick me up Friday morning to go straight to London for MRI to see if any bleeds were done when the count was low (very nervous about this) Delivery booked for Friday 13th June … 3 weeks, 2 days (not that I’m counting ;o)
Friday 23rd May
Having an MRI done on the baby’s brain is leading edge. It was done as part of a research project, and done through the tummy.
Getting loaded into the MRI machine was hard work as I have SPD (pregnancy related pelvis problem which makes lying on my side agony and moving a little on the difficult side). They wanted me to lie on my side and tried supporting me with all sorts of wedge pillows to get me comfortable and eventually I got to a position that was not too uncomfortable, only to discover that I did not fit in the machine that way! We had to do it again with me lying on my back but supported under my shoulders and legs in a gentle V (how I have to lie if i am going to get to sleep at night!).
It took a while and as I would not let them feel my tummy to determine the position of the baby … they usually have to press so hard to distinguish head from bum and having 2 recent pubs I was worried that my waters might burst. I have no idea how quickly the sac heals or how robust it is and was not taking any risks! So on Wed when i had the pubs the little fella was breech, so they loaded me into the machine only to discover that he had turned and was now head down, so out I came and had to be reloaded all over again.
I was told that my head would not enter the machine, which was a lie, so a little claustrophobic. The machine is very noisy and so I had headphones with music in to distract me. I was told during the quiet noises I would itch and move a little if i was uncomfortable but to stay completely still while it was making the big noises. It was all very well telling me to keep still, but the little fella did not like the big noises and wriggled and kicked the whole time. Luckily he kept his head still.
They gave me instructions through the headphones, eg breathe/hold my breath etc and also warned me when the machine was going to move etc. William could have come in with me but with my headphones on he would have just been sat there, not even able to have a conversation with me so he went for a wander. I was in the machine for about 40mins.
After I got changed again they took us into a room and showed us all the pictures. OMG I thought that the detail they could see on a scan was amazing, but here we could see the teeth growing, the lens on the eye (actually that was a bit spooky as she scanned in and out it was a bit like scenes from a horror movie!). She showed us the brain and the area where bleeds occur in NAIT babies as they bleed as a matter of course during development, and his brain was completely clear!
From the scan there was no evidence of any major bleeds and they wanted confirmation that there had not been any smaller bleeds which did not show on the scan. Not many hospitals do MRIs on babies and this was done at a research lab where they are trying to get better understanding of brain development, abnormalities, bleeds etc. the research has been going for about 5 years and with the exception of not going back for another scan when the baby is at term (he will be 6 weeks and will have gone through enough medical stuff by that stage) I am happy for them to keep in contact and see how he is getting on to aid their research. We will be having betamethasone tomorrow – 32 weeks and again at 33, platelet transfusion at 32,33,34 weeks, IVIG at 34+1 and delivering at 34+2)
Wed 28th May
Today’s count was only 20 (down from 285 a week ago)!!! So when I left Hammersmith the plan was to go to local hospital at midnight for second lung steroid injection and deliver locally on Friday. We weren’t sure if I would be having the ivig tomorrow or not. However having spoken to the local hospital my consultant in on holiday and their special care unit is closed … equipment and staff shortages!!!! So I have no idea what is happening now, whether I will be back at Queen Charlotte’s in London where I would be happy knowing I would get the care, but a pig of a journey for hubby or any visitors, or locally on a different day having had another transfusion? Or the next local hospital which has as good a reputation as mine, but who currently know nothing about me or NAIT as far as I know.
Yes they did transfuse and the baby is not in danger at the moment (325), but we lost on average c40 a day in the last week Thursday 29th It was my favourite midwife doing my IVIG, and broke down in tears on her. She was fantastic, she chased and got a resolution from me and I left my local hospital, carrying my IVIG in a cool bag and set off for Hammersmith.
Friday 30th! William arrived at 9am, at 10am we had been reassured that both IVIG and matched platelets were in attendance we were about to go into theatre when a siren went off and an emergency nicked my spot! Not sure what time we went in, but I had a wonderful anesthetist who talked me through what they were doing. It was he who confirmed wriggler, now named Ryan was a boy.
The next time I saw him was several hours later and he was on a ventilator so I still didn’t really feel like I knew what he looked like.
At 32w2d he was born, a rather large 5lb5oz, although that seemed tiny to me. On the platelet front, the cord sample gave a count of 165, but the first sample taken from Ryan was 310. The following two samples held counts in the high 290’s.
Ryan was breathing well when he came out, but after a few hours he started to struggle so they moved him onto a ventilator and gave him some steroids to help his lung function and precautionary antibiotics for 24hrs.
Monday 2nd June Ryan is doing really, really well, better than we could have hoped. He is breathing for himself and needs help with maintaining his temperature and feeding. Yesterday I got to cuddle him for 10mins for the first time … it was a lovely feeling and things started to feel real for the first time since last wed (can’t believe a week ago i was still at work!).
Today his count was 283. Also a bed became available in our local hospital so at 2pm today he was loaded into an ambulance and was transferred to Watford. I was also discharged from hospital with loads of pain killers.
Ryan is now settled in the local hospital where the drs are finding it hard to believe he was 32+2 as he is so big compared to all the other little ones in special care. He is currently in isolation due to the hospital trf, but after 48hrs and no issues he will be trf to the low dependency unit. I plan to be back there by 9am tomorrow in order to see the consultants and understand their NAIT blood test schedule etc
It was lovely to see my little girl though. Vanessa went hyperactive when I got home. It was probably the best tonic I could have had after my little cuddle with Ryan.
They had him on antibiotics as a preventative treatment, and they have taken him off that as well. As of today, he is on a heated blanket, and he is getting feed by line, but other than that, he is fit and well.
Mid June Coming home happened all a bit suddenly. was going to stay at hospital yesterday and today, but on Sunday the asked me to stay over and he fed so well that they didn’t need us to stay a 2nd night!
Ryan is now 6lb (5lb 5 at birth), he is 3.5 weeks old, or 35+6 adjusted gestation and feeding 100% from me!!! This is such an achievement for me as I had a breast reduction in 1994 and did not produce enough milk for my daughter so had to mix feed her, this time round I was given domperidone (sounds like a nice champagne) and it made all the difference. A bit gets into the milk, but seeing as they give it to the prems over here in liquid form if they have reflux no harm is done
I am a very happy lady, thank you to everyone for your support, it was amazing and the day when he had a count of 2 and we started transfusing in utero, seems to belong to another lifetime!
Lots of love to any NAIT parent or grandparent out there,.
Sue
