Itching to Breastfeed

24 Jun

I always knew that I would breastfeed. My mom breastfed me, and she breastfed my little sister when I was thirteen. Before I was even ever trying to conceive, I would have dreams that I was breastfeeding my baby, and it was the most wonderful feeling in the world. When I did finally become pregnant with my son, Gavin, I did everything I could to properly educate and prepare myself. I bought and read “The Womanly Art of Breastfeeding” by La Leche League International, I took a breastfeeding class at the hospital I was going to deliver at, and I wrote in my birth plan that I wanted Gavin put directly on my stomach so I could try to nurse him immediately after birth.

Besides some severe “morning” sickness which lasted until twenty-two weeks and pregnancy induced carpal tunnel my third trimester, my pregnancy was for the most part uneventful and routine until my ninth month. At thirty-six weeks pregnant, I noticed that the skin on my stomach had started itching a bit. I knew this was very common in the last trimester since the skin was being stretched so thin and tightly so quickly, not to mention the fact that it was the beginning of winter when dry skin is prevalent anyway. I did mention it to my midwife, and she affirmed that it was probably just normal stretching and told me to keep the skin hydrated with lotion. At thirty-seven weeks, I noticed that the skin in the stretchmarks under my belly button had become red and inflamed and continued to itch. At my next appointment I showed it to my midwife, and she once again said it was probably just due to the skin stretching so fast and prescribed me some hydrocortisone cream. I tried to keep my stomach lathered up, and hoped the itching would start to go away.

Everything seemed fine until I hit thirty-nine weeks. I was watching TV in the evening, and noticed my toe itched. I scratched it. It continued to itch. I kept scratching and then noticed what looked like hives appearing where I had scratched. I put some hydrocortisone cream on it and tried to ignore it. But within a couple of days the itching had spread to all over my toes and fingers. I tried not to scratch because every time I did hives would pop up and then leave blister-like marks behind. I felt like I had the chicken pox again. One thing I thought it could be was PUPPP, a condition that I first heard about through a friend of mine who had it with all three of her pregnancies. PUPPP stands for Pruritic Urticarial Papules and Plaques of Pregnany or, in layman’s terms, “really itchy hives and rash of pregnancy.” PUPPP sufferers are usually women having their first baby, have large fundal measurements and stomach distention, and seventy percent are pregnant with boys. One theory is that the mother is somehow allergic to the male DNA of her fetus. Another is that the distention of the stomach somehow triggers the rash since PUPPP usually starts in stomach stretchmarks and is much more common in pregnancies involving twins and triplets. At my thirty-eight week appointment I had mentioned PUPPP to my midwife, but she had said it was unlikely since usually PUPPP spreads very quickly to the arms, legs, and back.

I did everything I could to treat the non-stop itching. I read that some women with PUPPP had luck with Grampa’s Pine Tar Soap to dry up the rash. I lathered myself up with it, but all it did was make me smell like a campfire. Soaking my feet in ice cold water helped some, but it was only a temporary fix. I ordered some Sarna lotion to try which supposedly helpful with PUPPP, but had to wait for it to arrive. The only thing that brought any relief was rubbing ice cubes on the itchy area until it was completely numb. I tried very hard not to scratch because it spread the rash, but once in a while I would break down and scratch the hell out of the area. It felt amazing, but then the hives just formed more blisters and the itch would keep coming back.

When the itching in my hands and feet became unbearable, I did more research online. I read about a condition called cholestasis of pregnancy which is when the growing baby presses on the mother’s liver. This impedes liver function and can cause itching on the palms and soles of the feet because of the building up of toxins in the mother’s bloodstream. In rare circumstances it can cause stillbirths since the baby’s liver begins taking over more than its share of cleaning out the mother’s toxins. It is recommended that mothers with cholestasis are induced before thirty-eight weeks because of risk to the fetus. This severely alarmed me since I had already lost my first baby to a miscarriage at eleven weeks. I was also very stressed because I was planning a completely natural birth yet would induce if it was the best thing for my baby. I was urged by women on a cholestasis support board online to get my bile salts levels tested, which would measure my liver function, since sometimes the itching is the only symptom of cholestasis. At my next appointment, I brought this up and my midwife assured me that even if I did have cholestasis, the baby was perfectly fine and in no danger. She did send me to get my bile salts levels tested, however, just to be on the safe side.

As it so happened I went into labor on my own early the following morning. The itching had kept me up that night and the one previous, so I started my labor on only a couple hours of sleep. I was worried about having to go through labor with the itching, but “fortunately” once the back labor pains set in, the itching went away. My labor was very long and difficult, exacerbated by the lack of sleep, and I ended up becoming so swollen from pushing that Gavin had to be delivered with forceps. It wasn’t the natural birth I had wanted, but at least Gavin was healthy and safe, and I had avoided a cesarean. I wasn’t able to nurse Gavin immediately since I had to be sewn up from an episiotomy and third degree tear, but when I did he latched right away!

Unfortunately, as soon as he was delivered the itching returned. I had been given an intrathecal before the forceps went in to numb me waist down, and the nurse said it could be a side effect from the anesthesia. I knew it wasn’t but couldn’t seem to get that across to anyone. She gave me a round of Benadryl in my IV which helped me to get an hour’s sleep, but did nothing for the itch. During my hospital stay, no one seemed to know what to do for my itching. I was given a tranquilizer, but the only thing that helped at all was rubbing ice cubes on the hives. I was still unable to sleep. I sent my husband home the first night to sleep, and I had a very rough night with the itching and trying to manage Gavin while being virtually bed-ridden from the swelling and stiches. He seemed to be nursing well and would suck on me for over an hour, but I had no idea if he was getting anything. I was adamant about him not getting a bottle or a pacifier, and I didn’t want him sent to the nursery where he might be frightened and alone without me.

Fortunately the second night the hospital’s lactation consultant, Keitha, was on shift, and I requested to see her. She was actually the nurse who taught my breastfeeding class and was a wonderful grandmotherly figure. Keitha showed me how to self-express colostrum, and seeing the milky fluid come out of me was like an enormous weight off my shoulders. I think I actually cried I was so happy to see that Iwas actually making colostrum since I hadn’t been able to tell if Gavin was getting any nourishment. Keitha also helped me with Gavin’s latch and getting positioned correctly. I had only been able to feed him side-lying since my stitches prevented me from sitting up in bed. Later that night I did send Gavin to the nursery for a little while, and both my husband and I got a few precious hours sleep.

When we finally brought Gavin home, the crashing hormones finally hit me. I suddenly found myself home alone with a tiny helpless baby and still in very bad shape from my delivery. I couldn’t seem to get Gavin to latch and started to become hysterical wondering what I was going to do. Fortunately we had Keitha’s business card and my husband called her since I was too upset to talk on the phone. Even though we had inadvertently woken her up after her night shift, Keitha came right over to our apartment to help me. She brought with her a nipple shield and had me use it with Gavin. Gavin seemed to not have the reflex to turn toward the nipple when his cheek was stroked and would actually throw his head in the opposite direction. The nipple shield helped him to latch much more easily. Keitha also showed me how to use my breast pump to express some colostrum to put on the shield to tempt Gavin to latch that way as well. With her help I was able to successfully breastfeed Gavin his first night home. Fortunately my milk came in that night which was another huge boost to my confidence.

My next breastfeeding obstacle occurred when we brought Gavin in for his pediatrician’s visit a couple days after his birth. Gavin had lost more than ten percent of his body weight, which made his doctor concerned. He said that I could either supplement with formula, or if I was certain that Gavin was getting milk, we could keep breastfeeding and come back for a weight check two days later. I knew that Gavin was eating, so I refused the formula option. First off, I knew that Gavin’s birth weight might have been artificially high since I was given IV fluids at the end of my labor, so he might not have lost much of his actual weight. I also knew from “The Womanly Art of Breastfeeding” that sometimes at this first appointment the baby could actually be gaining well but seem like he’s losing because of the way the weight falls and rises as a curve. He could be on the upside of the curve, but still be lower than his birth weight. Gavin’s doctor wanted him to have gained two ounces by the weight check. I fed Gavin constantly those two days, and he ended up gaining twelve ounces by his check! That appointment was with a nurse practitioner, Anne, who was a lactation consultant herself. We decided to stay with her to treat Gavin since she was much more inclined to support my breastfeeding.

Through all of these breastfeeding trials, I was still dealing with the insatiable itching. The rash had now spread to the sides of my hips and down my legs. My friend who had had PUPPP said that the rash looked just like hers and that it went away by two weeks post-partum. I thought to myself, “Ok, well, it isn’t going away right after delivery, but you can make it two weeks.” I kept icing the spots to numbness, rubbing Sarna lotion all over myself, and taking oatmeal baths to try and soothe my skin. I still wasn’t getting much sleep with the itching and post-partum night sweats, and my recovery from delivery was very slow. I ended up pumping bottles for Gavin and having my husband feed him at night so at least I could get some uninterrupted sleep and hopefully recover sooner.

But a month passed, and my itchy rash had not cleared up. I was near my wit’s end. The itching was so bad it was like being tortured every day, and it was still affecting my sleep. From what I had read online about women who had PUPPP or other hives postpartum, for many of them it only went completely away when they stopped breastfeeding. Something about the elevated levels of hormones in their body seemed to keep the rash going. Some women suffered for six months or more when they refused to give up nursing. I had fought so hard to get breastfeeding down myself, and I was so adamant in giving the best nutrition I could to Gavin that I decided even if I totally lost my mind I wasn’t going to stop breastfeeding. There was also no guarantee that stopping breastfeeding would make the rash go away.

Wanting to try and figure out once and for all what was the matter with me, I called my midwife’s office to try and get an appointment before my six week postpartum check. However my midwife didn’t think the rash could be pregnancy related and didn’t feel comfortable enough with dermatology to diagnose me. I decided to go to the ER since I didn’t have a primary care doctor at that time. The doctor I saw in the ER decided that my symptoms sounded like scabies. I was a bit incredulous that I could have a highly contagious parasite and not have passed it on to my husband or baby, but didn’t know enough about scabies to argue. The doctor gave me a round of oral steroids plus an antihistamine and a topical insecticide. He told me that with the steroids I would probably have to pump and dump for the week I was on them.

I filled the prescriptions, then promptly had a complete breakdown when I got home. I knew I didn’t have enough milk in the freezer to get Gavin through a week and the thought of having to express enough milk to keep my supply up for a week with my little single plug-in pump was more than I could handle. I decided to get a second opinion and called Anne. She said that it was absolutely fine to take the steroids and nurse. She said that they even gave them to babies sometimes when necessary, and the amount that would be in my milk would be insignificant.

I decided to not take the antihistamine since I hadn’t had luck with them in the past with the rash and knew it could potentially hurt my milk supply. I also still highly doubted that I had scabies, and my husband backed that up having had scabies himself as a child. I did take the steroids, though, because I knew for women with PUPPP it usually helped get rid of the rash. After two days on the steroids, I finally had relief! The rash completely cleared up and the itching went away. It was like I was given a new body and could finally enjoy my baby.

However, as soon as I finished the steroid pack, the itching came back. The rash was less, only on my elbows and arms, but it was still there and as ferociously itchy as ever. I did the insecticide treatment just in the slight chance it was scabies after all. Having the itching come back was emotionally devastating. I started feeling like I couldn’t handle it anymore and was starting to have panic attacks thinking about it never going away. I only had a couple weeks until my postpartum check-up, so I resolved myself to make it that long so my midwife could take a look at the rash that had come back.

When I finally had that appointment, my midwife agreed with the ER doctor that the symptoms sounded like scabies even though it wasn’t presenting like scabies. She said that it couldn’t be PUPPP because that went away immediately after delivery. She agreed to let me try another round of steroids to see if it would clear up once and for all, but recommended that I find a dermatologist. Having yet another person tell me that it wasn’t hormone or pregnancy related made me feel like I was going crazy. Deep down I just knew that it was PUPPP or some other hormone related rash. I took the second steroid pack and started trying to get into see a dermatologist. This was difficult because I didn’t have a primary care physician. Meanwhile I tried to not get my hopes up with regards to the steroids. I told myself that even if the rash came back, at least I got a week’s break. Having that little break helped keep me keep my sanity and allowed me to continue breastfeeding. It’s a good thing I didn’t get my hopes up because once the week was over the rash appeared once more on my elbows seemingly even more itchy than before.

My husband was able to change my military insurance so I could be seen in the Army clinic on post, and I got into to see a regular doctor surprisingly quickly. I gave him the rundown of my history and symptoms. He said that he wanted to try one more round of steroids just in case it was scabies since it can take several weeks for the symptoms to disappear after the treatment. He was incredibly nice and told me to come right back in if the rash reappeared. I was hesitant to take more steroids, but Anne said it was alright as long as it wasn’t a long term thing. Of course the rash came back once more, so I was finally given a dermatologist referral.

When I saw the dermatologist, I gave him the history of the rash with all of the treatments I had done once again. He took a look at my elbow and said, “Well, that looks like PUPPP to me.” He then asked me if I had been very distended with my pregnancy, and I confirmed that Gavin had been like a torpedo sticking out the front of my stomach. He then brought me to his computer and showed me a Web M.D. article that he himself had written about PUPPP. It turned out PUPPP was a specialty of his. Contrary to what my midwife told me, the dermatologist said that up to fifteen percent of women with PUPPP have it long into the postpartum period and some even have it developAFTER they give birth.

I can’t even explain how relieved I was to finally have my gut feelings validated. The dermatologist said that since the steroids obviously worked while I was taking them he would give me a topical steroid cream to put just on my elbows so I wouldn’t have to subject my entire body to treatment again. He told me to make an appointment for a week later where he would check on me and do a skin biopsy if needed. Out of all of the doctors he was the only one who offered to do a biopsy to actually check to see if it was PUPPP instead of brushing me off and saying it was impossible. Fortunately the steroid cream finally cleared the last remnants of rash away.

It took me two and a half months after giving birth to have my PUPPP diagnosed and finally treated. In that time Gavin did not have a single drop of formula even though I had uninformed doctors telling me I either needed to supplement or pump and dump. It’s possible that stopping breastfeeding would have cleared the rash up much sooner, but I have never regretted sticking it out. I knew that breast milk was the best thing for my baby and was willing to suffer horribly myself in order to make sure he got it. Besides my own determination not to give up, I was also incredibly lucky to have the support of Keitha, my lactation consultant and Anne, Gavin’s nurse practitioner. They gave me invaluable advice and accurate information regarding breastfeeding, especially with regards to medication. But I am most grateful to my husband, Zach. He got me through nights where I was so itchy and sleep deprived I was hysterical. He always supported my breastfeeding one hundred percent, but also was sensitive enough to remind me that if I really could not bear it any longer formula was an option. He told me constantly that I shouldn’t feel guilty or that I was letting Gavin down if I needed to quit because I had already given him such a benefit by breastfeeding as long as I did. Fortunately I didn’t need to stop breastfeeding, and was also lucky to get diagnosed so if the PUPPP returns in a future pregnancy I will know what to do to treat it right away. I will also know next time around that I can absolutely breastfeed my baby successfully and nothing needs to get in the way of providing he or she with the best nutrition possible.

A personal story by Karen Gill, Gavin’s Mommy

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