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Conversations You Hoped You’d Never Have

When your eldest son is diagnosed with a rare genetic life-limiting condition, there are conversations you thought you’d never have. Ever.


The obvious conversations are dark and morbid; normally these happen in the early hours of the morning after a rough few days with doctors and specialist; these conversations are between me and my husband; a mother and a father afraid of what our growing son’s future looks like.

Then the not so obvious conversations…

When Ethan is out in a public setting he sometimes finds it difficult; due to sensory issues, pain, mobility issues, crowds or simply he has a headache- these can all lead to an overload and cause him to have a meltdown.

There are very little conversations had when this is happening, mainly I am given advice and opinions I haven’t asked for.

People tend to ask me about Ethan when he is happily running around and attempting to sing “Mickey Mouse” at the top of his lungs.

They ask because they see an older child trying to sing while a mother sits with him singing (badly) in an attempt to keep him engaged.

I understand that and I have no issue with anyone who wants to understand a child like Ethan; in fact I welcome it.

My conversations with these people are full of head tilts, empathy, compassion and often I get a prayer or candle lit for Ethan and us.

People are kind.

People care.

Every once in awhile, however, I will end up explaining why I have two more children.

How odd does that sound?

As a parent of any amount of children, have you ever thought you’d be asked why you have two children as opposed to one?!

No, neither did I. Until it started happening to me, a lot.

Ethan’s syndrome is genetic; which means after some testing, we learned it was a faulty gene I had passed onto him. (Simply speaking).

As parents, we pretty much all carry guilt when it comes to our children. And when you’re told that you gave your child an incurable and terminal condition, that guilt is sometimes unbearable.

So why did I have two more children?

That’s the question that some people are very comfortable asking me. I know why they ask it, but I still get a little taken aback by it. I honestly don’t expect them to ask it… but they do! I feel I must defend myself; explain to this stranger why I went on to have my other two boys.

J was 3 when we discovered that Ethan had Hunter syndrome. A syndrome, generally speaking, means you can see it. Armed with the knowledge that women carry the faulty gene and boys are the ones in (most) cases, who are affected by the gene, we knew J didn’t have the syndrome.

Nonetheless, we had him and he was given a clean bill of health. When we discovered 3 years ago that I was pregnant again, shock was probably the first reaction we both had.

Then came fear.

We immediately went to the GP who took blood and sent it away to be tested. The first test that needed to be done was to determine whether this baby was a boy or a girl.

We looked at each other as the doctor informed us of how sorry he was that it was another boy. This meant that there was a 50% chance that this little growing bundle would have Hunter syndrome. Had it been a girl, there was a 25% chance she would be a carrier and that she would have had to face the reality of Hunter syndrome if she were to have a baby.

I am not an overly religious person, but I do believe in a God. I believe God gives me the strength I need from time to time to face the things no parent should have to.

We left the doctor and decided that if this baby had Hunter syndrome, we’d know this time how to get him everything he needed. We would get him on the current medical trials in England and start enzyme replacement therapy (ERT) before his first birthday. Though not a cure, ERT slows down the progression of the syndrome and is required once per week, every week.

Nine months felt like years. As my belly grew and my ankles swelled, I prayed and prayed to a God in the sky, who I was pretty sure wasn’t listening to me.

Eventually, it was time for me to have my baby.

An emergency c-section convinced me that this little bundle had Hunters. Everyone in the delivery suite kept repeating that the baby was too big and all I could think was that Ethan was, too.

After D was born, I was afraid to hold him. I begged my husband to really look at him… his hands… his face and to see if he could spot early signs of Hunter syndrome.

I knew (logically) there was no way to tell at that age, without the proper testing, but I just thought that if anybody could spot the syndrome my husband or I would be able to.

I was not prepared to look at my baby until my husband did.

His little face was all squashed up. He was crying and he was huge (9lb 6oz !). “He wants to meet ya mammy” my husband said as he brought him over to me. I could hear the smile in his voice.

Taking my newborn son in my arms, I apologized to him and my husband. “Mammy got scared, but I love you so so much little man.” I prayed again as my baby boy slept on my chest.

Three weeks later, a phone call confirmed that our newest son was healthy.

To say we were relieved would be a huge understatement.

My old friend guilt quickly followed. Did this mean I didn’t love Ethan? That I couldn’t cope with another child having the same syndrome? Most parents love to see the likeness in their children, but I had prayed so hard that my newborn son would be like one brother and not the other. Did this mean I was a bad mother? What had I done? Why weren’t we more careful? How could I do this again?

When Ethan was diagnosed, we were told that we would need to think long and hard about having another sibling for J’s sake. We also learned that if every single person who wanted to conceive a baby had a genetic test, they would probably never go on to have that baby.

That is how “lucky” we all are when we have a healthy child .

If D had Hunters, too, I would have found that strength within me (we all have it) to have him in clinical trials ongoing in England and USA. The trial is a step closer to a cure.

We now have a brother for J who will live and grow into an adulthood. D has two very different big brothers who absolutely adore him and Ethan has two little brothers who will forever love him.

Ethan will always have Hunter Syndrome but with that comes a perspective that is unique to us, his family. He has taught us so very much in his (almost) 14 years. I have a feeling he has a lot more to teach us.

So why did I have two more children?

I got lucky just like you did. And that is the answer I normally give.

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Going back to work after having a baby is hard. Regaining your footing in a world where working mothers are so often penalized is tough, and (just like most things during the postpartum period) it takes time.

The challenges we face as working women returning from a maternity leave can be so different from those we faced before, it can feel like we're starting over from scratch. But mothers will not be deterred, even if our return to the working world doesn't go exactly as planned.

We are resilient, as Serena Williams proved at Wimbledon this weekend.

She lost to Angelique Kerber in the final, just 10 months after welcoming daughter Alexis Olympia and recovering from a physically and emotionally traumatic birth experience.

Williams didn't get her eighth Wimbledon title this weekend, but when we consider all the challenges she (and all new moms) faced in resuming her career, her presence was still a huge achievement.

"It was such an amazing tournament for me, I was really happy to get this far!" Williams explained in an emotional post-match interview.

"For all the moms out there, I was playing for you today. And I tried. I look forward to continuing to be back out here and doing what I do best."

The loss at Wimbledon isn't what she wanted, of course, but Williams says it does not mean there won't be wins in her near future.

"These two weeks have showed me I can really compete and be a contender to win grand slams. This is literally just the beginning. I took a giant step at Wimbledon but my journey has just began."

When asked what she hopes other new moms take away from her journey, Williams noted her postpartum recovery was really difficult, and hopes that other moms who face challenges early in motherhood know that they don't have to give up on whatever dreams they have for themselves, whether it involves working or not.

"Honestly, I feel like if I can do it, they can do it. I'm just that person, that vessel that's saying, 'You can be whatever you want to be.' If you want to go back to workand to me, after becoming a mom, I feel like there's no pressure to do that because having a child is a completely full-time job," she said.

"But to those that do want to go back, you can do it, you can really do it."

Thank you, Serena. You may not have won, but this was still a victory.

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Since baby Crew became the newest member of Chip and Joanna Gaines' family three weeks ago, his proud parents have been keeping the world updated, sharing sweet snaps of their youngest and even giving us a glimpse into his nursery.

Now, Chip Gaines is showing off a pic that proves there is nothing cuter than a floppy, sleepy baby.

"My heart is full..." the proud father of five captioned the photo he posted on his Instagram and Twitter accounts.

Earlier this week Crew's mama shared how she gets him so sleepy in the first place, posting an Instagram Story showing how she walks around the family's gardens on their Waco, Texas farm to lull her newborn boy to sleep.



The couple are clearly enjoying every single moment of Crew's babyhood. As recently as 7 days ago Chip was still sporting his hospital bracelet. Joanna says with each child he's worn his maternity ward ID until it finally wears off. We can't blame Chip for wanting to make the newborn phase last as long as possible.

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It was a changing table must-have a generation ago, but these days, many parents are forgoing baby powder, and now, the leading manufacturer of the sweet smelling powder was dealt a big financial blow.

Johnson & Johnson was just ordered to pay almost $4.7 billion to 22 women who sued, alleging baby powder caused their ovarian cancer.

A St. Louis jury says the women are right, but what does The American Academy of Pediatrics say about baby powder?

It was classified "a hazard" before many of today's parents were even born

The organization has actually been recommending against baby powder for years, but not due to cancer risks, but inhalation risks.

Way back in 1981 the AAP declared baby powder "a hazard," issuing a report pointing out the frequency of babies aspirating the powder, which can be dangerous and even fatal in the most severe cases.

That warning didn't stop all parents from using the powder though, as its continued presence on store shelves to this day indicates.

In 1998 Dr. Hugh MacDonald, then the director of neonatology at Santa Monica Hospital and a member of the American Academy of Pediatrics Committee on Fetus and Newborn, told the Los Angeles Times "Most pediatricians recommend that it not be used," adding that the consensus at the time was that "anybody using talcum powder be aware that it could cause inhalation of the talc, resulting in a pneumonic reaction."

Recent updates

A 2015 update to the AAP's Healthy Children website suggests the organization was even very recently still more concerned about the risk of aspiration than cancer risks like those alleged in the lawsuit. It suggests that parents who choose to use baby powder "pour it out carefully and keep the powder away from baby's face [as] published reports indicate that talc or cornstarch in baby powder can injure a baby's lungs."

In a 2017 interview with USA Today, Dr. David Soma, a pediatrician with the Mayo Clinic Children's Hospital, explained that baby powder use had decreased a lot over the previous five to eight years, but he didn't believe it was going to disappear from baby shower gift baskets any time soon.

"There are a lot of things that are used out of a matter of tradition, or the fact it seems to work for specific children," he said. "I'm not sure if it will get phased out or not, until we know more about the details of other powders and creams and what works best for skin conditions—I think it will stick around for a while."

Talc-based baby powder is the kind alleged to have caused ovarian cancer in the lawsuit (which Johnson & Johnson plans to appeal), but corn starch varieties of baby powder are also available and not linked to increased cancer risks as alleged in the case.


Bottom line: If you are going to use baby powder on your baby's bottom, make sure they're not getting a cloud of baby powder in their face, and if you're concerned, talk to your health care provider about alternative methods and products to use on your baby's delicate skin.

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In the days since a The New York Times report revealed a resolution meant to encourage breastfeeding was blocked by U.S. delegates at the World Health Assembly, breastfeeding advocates, political pundits, parents, doctors—and just about everyone else—have been talking about breastfeeding, and whether or not America and other countries are doing enough to support it.

The presidents of the American Academy of Pediatrics and the American College of Obstetricians say the controversy at the World Health Assembly reveals that mothers need more support when it comes to breastfeeding, while others, including The Council on Foreign Relations, suggest the national conversation needs more nuance, and less focus on the "breast is best" rhetoric.

The one thing everyone agrees on is that parents need more support when it comes to infant feeding, and in that respect, the controversy over the World Health Assembly resolution may be a good thing.

In their joint letter to the editor published in the New York Times this week, the presidents of the American Academy of Pediatrics and the American College of Obstetricians, Dr. Colleen Kraft and Dr. Lisa Hollier urge "the United States and every country to protect, promote and support breast-feeding for the health of all women, children and families."

The doctors go on to describe how breastfeeding "provides protection against newborn, infant and child infections, allergies, asthma, inflammatory bowel disease and sudden infant death syndrome," and note the health benefits to mothers, including reduced risks for "breast cancer, ovarian cancer, diabetes, hypertension and heart disease.

"Helping mothers to breastfeed takes a multifaceted approach, including advancing public policies like paid family leave, access to quality child care, break time and a location other than a bathroom for expressing milk," say Kraft and Hollier.

Certainly such policies would support breastfeeding mothers (and all mothers) in America, but some critics say framing the discussion around domestic policy is a mistake, because the World Health Assembly resolution is a global matter and women and babies in other parts of the world face very different feeding challenges than we do here at home.

In an op-ed published by CNN, Gayle Tzemach Lemmon, an adjunct senior fellow at the Council on Foreign Relations suggests the laudable goal of breastfeeding promotion can backfire when mothers in conflict-riddled areas can't access formula due to well-meaning policy. Lemmon points to a 2017 statement by Doctors Without Borders calling for fewer barriers to formula distribution in war-torn areas.

"International organizations like UNICEF and the World Health Organization (WHO) promote breastfeeding ... and provide infant formula, but only by prescription. We believe that distributing infant formula in a conflict situation like Iraq is the only way to avoid children having to be hospitalized for malnutrition," Manuel Lannaud, the head of Doctors Without Borders Iraq mission wrote.

The various viewpoints presented this week prove that infant feeding is not a black and white issue, and policy debates should not be framed as formula versus breast milk—there is more nuance than that.

A recent study in the Journal of Pediatrics found opting to supplement with formula after first breastfeeding improves outcomes for infants and results in higher rates of breastfeeding afterward, and while the benefits of breastfeeding are numerous, they are sometimes overstated. Another recent study published in the journal PLOS Medicine found breastfeeding has no impact on a child's overall neurocognitive function by the time they are 16. Basically, parents should not be shamed for supplementing or choosing to use formula.

This, according to Department of Health and Human Services says national spokesperson Caitlin Oakley is why the HHS opposed the original draft of the breastfeeding resolution at the World Health Assembly (although critics and the initial NYT report suggest the United States delegation were acting in the interests of infant formula manufacturers).

"Many women are not able to breastfeed for a variety of reasons, these women should not be stigmatized; they should be equally supported with information and access to alternatives for the health of themselves and their babies," Oakley said in a statement.

That's true, but so is everything the presidents of the American Academy of Pediatrics and the American College of Obstetricians presented in their op-ed, and that's why the U.S. should support breastfeeding policy.

Here's another truth: This is an issue with many perspectives and many voices. And we need to hear them all, because all parents need support in feeding their babies, whether it's with a breast, a bottle or both—and we're not getting it yet.

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