Tina

Age at interview: 36

Age at diagnosis: 21

Brief Outline:

Tina was diagnosed more than ten years ago and has seen how the infant feeding guidelines have changed to support others who wish to breastfeed. She had intended to breastfeed but on having twin babies who were born premature, she decided to formula feed.

Background:

Tina is White British and is married with twin babies aged seven and a half months old.

More about me...

Tina conceived her twins through in vitro fertilisation (IVF) with the last embryo available to her and her husband. Together they share parental leave.

Tina was diagnosed with HIV in 2007 when she was in her early 20s. She found out after a routine sexual health screen. The medical professional who gave her the diagnosis told her she would have “at least 10 years” to live, but when she was referred to the HIV clinic, they reassured her that she would have a normal life expectancy. Tina knew someone with HIV already, and the support that she received from her HIV clinic helped her to cope with her diagnosis. At the time, she did not begin HIV treatment.

Not long after her diagnosis, Tina started a relationship with a man that would become her husband. She told him about her HIV diagnosis six months after they began dating. Tina went to peer support and met other women living with HIV. Initially, Tina had been frightened that she would not be able to have children and worried about transmission to her babies, so seeing mothers with HIV who had babies that did not have HIV had a big impact on Tina.

In 2009, Tina began HIV treatment and has been undetectable since then. Before she was pregnant, her and her husband discussed how they would feed their children. They had been trying to conceive for a few years. They had planned to breastfeed, Tina said her husband would have supported whatever decision she had made. Tina was well-informed about the BHIVA infant feeding guidelines and regularly discussed them with her HIV doctor before and during pregnancy.

Tina wanted to breastfeed for the bonding and connection, as well as the health benefits. However, she did not breastfeed in the end. Due to health complications, her babies were born by caesarean section. Tina felt there was limited research on breastfeeding premature babies, and she was concerned about having enough milk supply for two babies at the same time. She discussed the research and possibilities with her HIV doctors and concluded that she would formula feed. Tina said she might have considered breastfeeding one premature baby or full-term twins but having premature twins did not feel safe.

Tina felt that breastfeeding might have been easier, but formula feeding allowed her husband and other family members to share feeding duties. Via her HIV clinic, Tina had access to one year’s supply of formula milk for each baby, however her babies required special formula milk which was more expensive. This resulted in a budget that would normally cover a year’s supply of formula, only covering a couple of months. Tina felt “lucky” that her and her husband could afford to buy the remainder of the formula milk.

Only a small number of family and friends know Tina’s HIV status, so when others ask her why she is not breastfeeding, she told them that as the twins were premature she did not start lactating.

After the initial shock from being (wrongly) informed that she had 10 years to live, Tina learned that taking the latest HIV treatment would keep her well.

Obviously it was, how long, that was nearly 15 years ago, so the test result were reported to me from a sexual health clinic and I remember at the time the guy who, I don’t remember his name, who told me my diagnosis said that, you know I think sort of ‘oh you’ll have at least ten years’ or something like that. So obviously at, at the age of however old I was then, I can’t remember 21 or 22, but that was quite a shock but very quickly when I actually got referred to the consultant at an HIV clinic obviously got the better and more informed information. About, I was told about how good drugs are and how good the education is, all the research that’s been doing, you know, and, and you know, life longevity you know, usually is, you know, the clinical approach is no more for people who don’t have HIV and you know, was much more positive. And then as I say they had counsellors so just to help you, you know, chat about the diagnosis and things like that.

Although Tina eventually decided to formula feed her twins when they were born prematurely, she really valued how knowledgeable and supportive her consultant had been.

So I read the- what’s the British HIV Society- guidelines and I found them online, the newest ones and then chatted to my consultant at my clinic now who I think actually writes those guidelines. She was fantastic and she runs the pregnancy and kind of that arm of the clinic that I go to so she’s just super knowledgeable and full of, you know, absolutely cutting edge information. You know, about all manner of things, pregnancy and feeding and that sort of thing, so yeah.

Tina had twins and they were premature, so she did not feel able to breastfeed but she’s pleased that the new guidelines give mothers more choice.

Sure so yeah the current guidelines are, well the research rather is based on full term babies and the safety is based on purely breastfeeding for six months and not combination feeding and our twins were born at 31 weeks, so very early and there’s two of them. So, the fact that the safety data isn’t there for premature babies yet and the fact there’s two of them I just felt that solely breastfeeding would be very difficult, I know some people manage but I think, you know, the number that manage to exclusively breastfeed multiple babies is much lower than a singleton and the safety data isn’t there for premature babies. So I spoke to my consultant and chatted it through with her and we decided that, well I decided ultimately that, you know, safety first sort of thing so decided not to. But luckily where I am the NICU (Neonatal Intensive Care Unit) because they were in intensive care for eight weeks, well the special care baby unit for eight weeks, they have access to a breastmilk bank so they had donor breastmilk for the first sort of three weeks which was great and then went onto the premature baby formula.

Tina was with a specialist midwife team because of having twins and felt the care was fantastic. She had no worries that her diagnosis would impact care.

I was under a specialist midwife team because of the multiple pregnancy and the care was just fantastic absolutely no concerns about you know, people being worried about my diagnosis right through from all of the tests that I had to have during the pregnancy, the delivery which obviously was caesarean and you know, with about 20 people in theatre because the boys were so early and aftercare, just absolutely no, yeah you know no worries from me about the people sort of thinking or worrying about my diagnosis.

Tina wondered if it might have been easier to breastfeed.

So you know, I haven’t breastfed so I don’t know, there are times where I definitely wish that I just, you know, had to whip out a boob and feed, you know, in the middle of the night instead of getting up and making two bottles and you know, doing that is, bottle feeding is, sorry formula feeding takes a little bit more organisation I think I know, you know, of course people struggle with breastfeeding, can be a real trial as well.

Tina was asked why she was not breastfeeding, and not many people knew about her HIV status. She told them it is because her twins were born premature.

People have asked am I breastfeeding and I just said that unfortunately because they were so early I didn’t get any milk but, you know, that, that played on my mind a lot actually how to tell people why I wasn’t feeding or pumping or, you know doing it, so I think having the excuse of them being early has helped in a way and you know, just, just to use that as a sort of reason why I haven’t breastfed. But no-one has, no-one has kind of asked twice, you know or been sort of pushy about it, so that’s been nice.

Tina’s twins were premature and needed a special type of formula milk. Because it costs more than standard formula, her clinic was only able to supply her with it for a few months.

Yeah sure so the boys unfortunately had really bad reflux since birth really probably because of their prematurity and so we not in the hospital, well I say hospital, when we came home we quickly transitioned from the premature formula onto an anti-reflux formula which is fairly costly at £14 a tub. So, we’ve just been buying it but our local, well my clinic offer, so they either offer a years’ worth of formula you know, bought by them or I think it was three months of donor breastmilk per baby. So the formula they have access to is a sort of standard formula so had the boys been able to tolerate that formula we would have got a years’ worth for both babies from them which is just incredible however because they’re on the anti-reflux formula and it’s so much more expensive even at cost price to them they managed to get us enough, I think it lasted a couple of months which, you know, is, it’s still a big chunk of money that they used to give us some formula. So that was, that was really nice and you know, as I said we just bought the rest.